Christina Cipriano

@christina-cipriano | contributor
Christina Cipriano, Ph.D., is an Applied Developmental and Educational Psychologist and Director of Research at the Yale Center for Emotional Intelligence. She is the proud parent of four beautiful children who motivate her daily to take the moon and make it shine for everyone. You can read more about her experiences and science at www.drchriscip.com

Why Everyday Acts of Disability Inclusion Matter

To the woman behind me in line at the checkout, We all have places to be. But as I watch you watch our clerk move through my order, I wish you could see what I see. Yes, his movements are less coordinated than you may anticipate. And he is striving for precision rather than time efficiency as he meticulously packs each item ever so carefully into their respective bags. He is communicating with me on a script, following through each step of our interaction whether or not the step is necessary. He is not slow. He is thorough. I see you scoff as I interrupt his flow and ask him how his day is going. He pauses to respond to me; his eyes look up briefly my way and then down, and he shows hints of an unsure smile as he searches to find his answer. All the while I see you behind me huffing, shifting your weight nervously while checking your phone every few seconds. I assure you, I am aware of your increasingly glaring looks coming my way. I wonder if he is too. I wonder if you would behave like this in front of your children. I hope not. Even though our interaction and conversation my not appear meaningful to you, who’s to say it wasn’t meaningful to him? He deserves to be engaged and treated with the same respect you would treat anyone else. I wonder how he is feeling. I wonder if other people take the time to ask him how his day is, after he so politely asked me. I hope they do. I thank him for his help as I walk away. Diversity, equity and inclusion is not a policy in your corporate handbook, a memo from HR or a waiver you sign. It’s appreciating our common humanity. It’s alive in our interactions with one another. Let’s make sure what our children see is the world we all want to be living in. Inclusion starts and ends with each of us. Sincerely, A mom who hopes that someday her son can be that clerk

Fixing a System That Fails to Meet the Needs of Kids With Disabilities

I waited 27 minutes on a line at the registry of motor vehicle (RMV) Friday morning to be told they could not process our 6-year-old son’s approval for a disability placard without taking a picture of him. The attendant apologized for the miscommunication in the approval paperwork we received from the state. The RMV does not have any weekend hours, so I was told if I came back right after he got home from school he wouldn’t have to wait and they would take us right in and get this approval processed. It wasn’t the desk attendants fault. She was kind. My son and I waited 18 minutes in the express line at the registry of motor vehicle Friday afternoon to be told they could not process our approval in this particular line — and we were kindly directed to a different line behind the counter. It wasn’t the desk attendant’s fault. He was just doing his job. My son and I waited 35 minutes in the line behind the counter at the registry of motor vehicle to have his approval processed for his disability placard. I administered his afternoon medicine while we were waiting. I was feeling lucky I had brought it just in case things took longer than expected. That’s our role as parents of children with disabilities — you always need to be prepared. Unfortunately, not trusting wait times is part of the territory. The attendant was kind. She explained that I would have to now hold my son up to take his picture. “Can he just stay in his chair?” I asked. “No” she replied, “The camera isn’t designed to take pictures of children, only adults in wheelchairs, so it will cut off his head.” I proceeded to take my son out of his chair and try to hold him up appropriately for his photo. This took another 12 minutes or so to get his face in the frame without his hands or my face. He was upset. So was I. It wasn’t the desk attendant’s fault. She was kind and doing her job. What if I couldn’t lift my son for the photo? What if we weren’t able to capture a photo to spec? Would we have been denied a placard? Why must we take the photo live in the first place? Is the medical documentation from his treating physicians not enough evidence that he is indeed deserving of a placard? Are the RMV attendants trained to judge a person’s eligibility? Did they just want to see him come in the building in his chair? Why not make the process less burdensome and more efficient by allowing us to have a passport photo taken and submit that through the RMV for processing? Or at the very least, have the camera capacities available at the RMV be similar to that of other agencies so to ease the burden on our children and their families? This experience was another screaming reminder that this is not the way things should go. The need for this photo is a direct result of him being eligible for a disability placard. Isn’t the most common expectation that he would be in his chair? Let’s rewind to nine weeks ago when our developmental pediatrician strongly recommended that we pursue an application for a disability placard for our son. This was an emotional moment for us. We know he needs one as he requires a chair now for most support. Even though we know this in our heads, we are still coming to terms with our son’s deteriorating muscle tone and motor skills in our hearts. We are still holding on to the hope that this regression will stop, that science will catch-up to his needs, that we’ll get placed in a clinical trial and have all the right therapies in place so that he doesn’t require this level of support for much longer. We went home and looked up the application online. We filled out the paperwork from the registry of motor vehicle. We then took that paperwork back to the hospital for his doctors to sign. We then took that paperwork and sent it in to the state for review. When we received notice in the mail of his approval three weeks later, we were excited — an unheard of quick turnaround compared to other federal paperwork processes we’d experienced to date! And, only one more hurdle! The paperwork outlined we were to go to the RMV to have the approval processed. So that’s what I did on the next available weekday morning. And then, that’s what we did later that same afternoon. I felt frustrated as I circled for parking that afternoon at the registry of motor vehicle with my son. The lot was much fuller now with the after school and end of work day crowd. It seemed rather ironic that he was required to be there in person to process the approval for his disability placard, yet not given the ability to park in their handicap spaces for this visit to the RMV. The attendant told me it would take an unknown amount of time to receive his placard in the mail. “I just don’t know,” she said, “It varies so greatly it wouldn’t be fair for me to guess.” The attendant was kind. It wasn’t her fault. I can’t help but wonder, whose fault is it? The system is undeniably broken — fractured at seemingly every encounter we have with it. And unfortunately, we are not alone in trying to navigate a maze of inefficiencies, barriers, and injustices in pursuit of health and well-being for our son. We are a part of the fastest growing minority group in the world — an estimated 1/4 of the global youth population require special medical and/or education attention. Our collective political history has demonstrated that these broken systems won’t become a problem worth fixing until they inconvenience everyone — or at least enough persons with power and privilege to draw attention to an issue needing to be addressed. Have we not enough evidence already in our past to know that reactionary practice is never best practice in education, in medicine or in policy? So if it’s no one’s fault, then I contend everyone is to blame. The longer we tacitly concede and go through our daily lives working within the broken system, the longer that it will appear to be a system not in need of fixing. And for our family, we are done waiting for someone else to fix it. I share our experiences to raise awareness and advocate for the protection, enactment and preservation of basic rights for all our beautiful children with disabilities and all their beautiful families who are fighting for them. No parent should have to wait out the system at the expense their child.  I refuse to wait out the system any longer at the expense of my son.

Raising a Child With Phelan-McDermid Syndrome

“And now, you fight.” These were the first words spoken to us by our son’s diagnosing developmental psychologist when he received a diagnosis of autism in October of 2017. A diagnosis the same developmental clinic had told us he was not a candidate for 18 months earlier. A diagnosis that explained enough for now. A diagnosis that was supposed to open doors for his medical servicing while we continued testing to figure out what was really going on. Why do we tax the parents and families of children with disabilities? Why do we make them fight? Having your child receive a medical diagnosis – any medical diagnosis– is traumatic. And you’ve likely already climbed up an uphill battle to get there. It’s emotionally draining. It can be exhausting, having to explain and then answer questions that you as the parent don’t necessarily have the answer to. Answers you don’t want to know. Don’t want to remember, or will never know. It’s time to hurry up and wait. Waitlists. Forms. Packets of information. The same questions asked over and over again with ever so slightly different language. All for the same end goal, but there is seemingly no coordination between them. Everyone in education and medicine is overworked. No one has enough time. Every child needs better coverage, more comprehensive treatment, more coordinate care. And there’s the unspoken cost of a diagnosis. The time invested in caring for your child. The time at doctor’s appointments. The time it takes to schedule those appointments, the time spent in waiting rooms. The time filling out forms. The co-pays, the deductibles, and the sleepless nights. It took our family six years and three months to receive a diagnosis. Our narrative is not novel. Why is every step a fight? Why does society put so much strain on us? Every time we have to fill out a form and tell a new provider/system/agency how much our child doesn’t know. Can’t do. Can’t demonstrate. Pay for a test he can’t score on – one medical professionals can’t even interpret themselves. How many times do we have to be asked to reiterate his deficits? How is this helpful? Why not assess what he can do? For me, I feel traumatized all over again each time we need to fill these forms out. And as he gets older, the questions grow in complexity while they become less relevant to our son. The constant evolving reminders of what he can’t or might never do is not helpful to him, his providers, nor our family. It’s a time suck. And it hurts. We need to stop focusing on the “can’ts.” If you need support, join our #checkinwithme community: The assumption that children with disabilities have a built-in special network of supports is a grossly mistaken narrative. There is no fantasy land of providers reaching out their hands and their hearts to service your child. Indeed, we have met some of the best in the country along our journey. We’ve had doctors call us from their personal cell phones on a weekend, during the evening, with test results, updates or just to check in. We’ve met doctors who gave us their time, their attention, and their hearts. At the same time, we’ve also met doctors who have left us to feel hopeless, disenfranchised and alone. We have had doctors tell us to “control our child” so they can run tests. Tests he won’t score on anyway. We’ve had doctors tell us to seek a second opinion if we don’t like theirs. We’re glad we did. Our son has Phelan-McDermid syndrome. His 22q13 genetic mutation underscores his inability to develop and thrive typically. He is one of an estimated 1,950 people in the world with this diagnosis. Among the science that is known, the prognosis given indicates he will experience significant and chronic regression in skills – a rate that will accelerate between the ages of 4 and 6. He received his diagnosis when he was 6 years and 3 months old. We have been on waitlists for in- home ABA services for 13 months. We had been waiting for the Department of Disability Services (DDS) to confirm his eligibility for services for 12 months. We were referred to the augmented communication systems department to give us clinical assessment of his needs and guidance for his school services and at home provisions to enable our son to communicate his needs– to be fitted with a voice. Two weeks after being referred we received the phone call in October of last year. They explained the process. They would be sending us a packet to fill out about our son and then upon receipt of it they would call us back and schedule his appt. They are currently booking out into May of this year. Why does our son have to wait the entire year of kindergarten to get guidance on what voice would work best for his needs? When we get this information it won’t just happen overnight either. He won’t be presented with a magical voice box and we’ll be on our way. We’ll have to agree upon a pathway with the clinician. We’ll have to get insurance and DDS approvals. We’ll have to wait for the technology to be manufactured for him. Maybe by first grade our son will have a voice. At what point do all the parents who are struggling with managing the demands say, “Enough is enough. We won’t wait anymore! We won’t accept these timelines!” When will society fund more doctors? When will changes in our education system channel more human service professionals to meet the growing demands of children and their families? When we will stop telling families to wait? When will we stop weighing down their hopes, their patience and their pride? It’s an equality issue. And it’s a money issue. No one wants to pay. No one wants to be responsible. The reality is that the costs of children who have disabilities get more expensive over time– hence the argument for intervention early and often. If we invest in children while they are young, it costs society less when they are older. So why are we making children wait for services and intervention during these sensitive periods of development? Why are we forcing families to wait it out and fight their school systems for more help? Why is this the norm we’ve come to expect? I can tell you why the parents of children with disabilities put up with it all. Because they have no time for that fight. After the doctor’s visits, therapies, medication refills, insurance referrals, conversations with providers and navigating the evolving needs of their beautiful child, they might also have to tend to other children who deserve their attention, or spouses and families. They might also have careers with their own set of demands. They have dreams of experiences outside of therapy visits and phone calls to fight for. They have interests in conversations about more than what their child can’t do. They have interests. Period. They have feelings. They have weaknesses. They have unmet needs too. For all the parents, caregivers, families and children in the fight, know you are not alone. And your fight isn’t your own –it’s all of ours and we are in this together. Because our children deserve the world and we won’t stop until we build it for them. And so together, we fight.

My Child’s Disability Is Not a Disadvantage, It's Just Different

My child’s disability is not a disadvantage: It challenges me to be a better parent– the parent I didn’t know I could be and didn’t know how to be, but I am better because of it. It keeps me patient, kind and humble. It has taught me how to ask for help and how to receive it. It compels me to prioritize what’s really important. It has shown me I can handle more than I ever could have imagined possible. It keeps me organized, attentive, young at heart and wise in mind. It motivates me to earn more, do more, teach more, advocate more for my child and for others. It grounds me. It keeps me honest, practical, reasonable and logical. It taught me how to give a compliment, how to see joy, how to feel frustration and how to kiss a boo-boo you can’t see but know is there. It taught me about friends. The real friends who we already knew and opportunities for new friendships to develop. It helps me recognize the beauty in the ordinary world around us as truly exceptional. It compels me to make it count. Always. It challenges me to be creative, to be prepared, to think under stress, function in anger and confront denial. It broke down walls and built bridges with healthy boundaries for my family. It continues to teach me how to see the best in those around me. It keeps me going. It enriches my family in beautiful ways that words will never capture. A beauty that’s felt in a laugh, a smile, a glance, a touch. My child’s disability is not a disadvantage. It’s a different vantage point. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by: tatyana_tomsickova

An Open Letter to the People Who Feel the Need to Tell Me I Have My Hands Full

Thank you for feeling the need to reiterate what I already know; I have more children than hands. Indeed, I’m not an octopus, although I continuously attempt to be. Thank you for confirming my fear — that I’m perceived as a walking train wreck when out in public with my children. Thank you for acknowledging that I clearly don’t have things under control, despite my best attempts to plan otherwise. Thank you for making me feel small. I struggle with how to respond to your comment. Do I smile even though your comment doesn’t make me happy? Do I laugh with you (although it really feels like you’re laughing at me)? Do I shrug or nod in agreement with you? Most of the time I feel the need to provide an explanation; Man plans, and God laughs often comes to mind. But what you don’t know is my life is so much more full than you realize. What you don’t know is my eldest child can’t be the “helper” you say he must be. You don’t know he’s not just shy or tantrum-ing right now. You don’t know the amount of time I spend at doctors and specialists and hospitals with my hands full. You don’t know my enormous bag is packed with more than just the typical array of diaper bag goodies and that I always need to be aware of my child’s health and viability. You don’t know the sleepless nights of monitoring. You don’t know anything, really. When I get out of my house on time, it’s an accomplishment. Hell, getting out at all is. Most of the time it’s for a doctor or therapist appointment, but that’s our life right now, and out is out. It’s the little victories that make our life full these days. I don’t feel the need to comment on how light your load is. Wow, you have your hands free! Maybe you should help me, since I’m clearly encumbered. That would be rude to say, and I’m raising my children to be better than that. So I say, thank you. My children, in all their unbridled glory and imperfections, are blessings, and yes my life may appear to be more than I can bear right now, but we’ve been blessed with a full one, and for that I couldn’t be more thankful. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

The Hardest Part of Being a Parent

I was recently asked to reflect upon what the hardest thing is about being a parent. It’s advocating for a sick child with professionals who are supposed to know far more then you do. It’s the looking at other children and asking, “Why us?” It’s looking at other children and thinking, “Thank God that’s not us.” It’s the guilt, the shame, the denial and the blind spot you have for your child. It’s the assumption that you’re always prepared, planned and organized for whatever the day may bring. It’s staying up late and getting up early, always being on and always having the right answer. It’s not knowing how to trust your parental intuition. It’s the responsibility of caring for your child even when no one is looking. It’s feeling guilty that you can’t wait to leave to go to work for some relief. It’s the worrying when you’re not home that you should be there. It’s the constant fear that you’re failing at the most important job of your life. It’s remembering who you were as a person before becoming a parent. It’s remembering who you wanted to be as a parent someday. It’s the long days and short years. It’s feeling, more often than not, that you are half-assing everything and succeeding at nothing. It’s finding time to shower, think and blink. It’s the laundry. And the grocery bills. And the medical bills. And the life bills. It’s everything you don’t see on Facebook.