By Kat Vizzone
Being a new mom is tough. Being a new mom with a child who has “special needs” is also tough. As I scroll through social media mindlessly, my feeds are now filled with that term: “special needs”. What does that even mean? In some way shape or form every child has a special need. Every child has different needs and that is what makes them so special. Overall, all children need love, compassion, security, attention, and nurturing.
My child, like all others, was born with special needs and because there is only one Anthony James Vizzone his special needs are very different then anyone else.
Anthony (our one and only child) now 3 years old, was born with Trisomy 21: Down Syndrome. He was also born with congenital cataracts. Before he was 3 months old he had undergone two quick eye surgeries. After that he wore contacts for about a year. The first year of his life Anthony blossomed and met many milestones. I was just getting to know about his special needs as a baby with Down Syndrome. On a daily basis I did my best to provide him with the love and support he needed to be successful and to continue to grow and develop.
The summer after he turned 1 everything suddenly stopped. He stopped babbling, he stopped interacting with others. He wanted to flap his arms, look at lights, spin, flap some more, push the same buttons over and over again. Around this same time, he started to get sick: pneumonia, bronchitis, and chronic ear infections. I thought he hit a plateau because he was sick all the time. Also, I was told that his congenital cataracts could play a role in some possible developmental delays. My inner voice just kept saying: “I’m a new mom: my child has down syndrome, he’s been sick, he had two surgeries, he has no siblings, he's falling a little behind and that's OK.”
However, that wasn’t the case. How could it not be the case? I did the “things”. I provided all the “special needs”: love, compassion, security, attention and nurturing. This includes taking unpaid leave from my career that I loved, endless reading, early intervention therapy, private therapy, checking off the specialist doctor “must see” lists. I was doing it all. Finding the best of the best therapists and doctors, even if it meant a two hour car ride.
In August of 2019, I took Anthony to his developmental pediatrician appointment at Children’s Hospital of Philadelphia (CHOP). My dad came with me that day and he was excited for cheese steaks and I was excited to have company for the appointment. “CHOP” days are long and exhausting and lunches, naps, and snacks have to be planned just right in order to have a successful appointment day. Anthony saw this doctor once prior and the appointment went very well. On this appointment day we waited for a long time to see the doctor, which can happen. At the developmental pediatrician appointment you sit in a room and at some point of the appointment you see a Physical Therapist, Occupational Therapist, and a Speech Therapist. They all come in and do their quick evaluation and then the doctor comes in. By the time she came in that day Anthony had eaten a late lunch and was ready for a nap and wasn’t exactly cooperative. We had already been in the room for two hours. The doctor sat down, asked me a few questions and without any hesitation she said that Anthony showed many “autistic tendencies”. Those “autistic tendencies” included the new behaviors that I also started to notice: the lack of making sounds, flapping arms, inattentiveness, spinning and flapping. But I thought there would be another explanation. The label “autistic” stung me so hard. When the word came out of the doctor’s mouth I felt like someone crushed my soul. Immediately, the tears poured out of my eyes and I couldn’t breathe. I tried so hard to make them stop because I specifically didn’t want my dad to see me so upset. Never in my life have I reacted this way at an appointment. I was shocked and dumbfounded. She asked me what I thought? I had no words for her so with my head hung very low I just shrugged my shoulders, but I’m sure they saw my back shaking and the tears dropping from my face. She asked me: “Is this surprising to hear?” I nodded, and cried more. At this time I couldn’t even pick my head up to look anyone in the eyes. I don’t remember not one a single word the doctor said after that. The words “autistic tendencies” were so unexpected. I never ever once thought that Anthony would be receiving a dual diagnosis, I didn’t even know that was an option.
Denial set in the minute we got on the elevator to go back to the car. Anger set in before I even pulled in the driveway: “how dare that doctor say that. She spent no time with him and she doesn’t even know him.” I wrote a nasty email to the department and my survey wasn’t pleasant. I struggled from August-January and even went for a second opinion. During this time, I continued to believe that it’s because he was still sick all the time and not being around other kids to learn from them. We took Anthony for a second opinion and she too noticed some “autistic tendencies”.
Personally, I just couldn’t understand why he had to have both. Wasn’t his life going to be challenging enough just having down syndrome? He already has to work harder than any other typical child his age to achieve various milestones. I wonder if he will ever talk or walk? Will he have friends? I honestly can say I started to really worry about Anthony’s future at this point. I hadn’t until I began to “consider” the diagnosis. I wondered what I did wrong. I still sometimes feel like maybe I could've done something differently. I felt like I failed my son. I spent so much precious time trying to figure out what I did wrong. How did he go from being on track with meeting all his milestones to a fast abrupt stop. Now, I have to learn about something else: another “special need”.
The first thing I did was reach out to my “people”. My “people” include some of Anthony’s trusted therapists, and some of my mom friends whose kids also have Down Syndrome. One of his therapists told me about a wonderful private ABA therapy program and put me in touch with them. Prior to this I never even knew or heard of an Early Intervention type ABA program. My brain had been fixed on having a child with Down Syndrome. I knew nothing about autism. I still know very little. I toured all the locations and picked the school that Anthony would go to. I met and talked at length with his “soon to be” BCBA. In order for insurance to cover Anthony’s Monday-Friday, 40 hour aba therapy week he needed to have an official Autistic diagnosis. Neither of the Developmental Pediatricians felt comfortable with giving Anthony his official diagnosis. This blew my mind! They wanted to wait another 6 months! Six months in the Early Intervention world is an eternity! We went to our pediatrician because Anthony has another bout of pneumonia and I was talking to him about the diagnosis and the insurance. He graciously wrote the script and gave Anthony the diagnosis. One week later, the world shut down due to covid.
During the summer of 2020 when the world was closed we sent Anthony to school. It was the most difficult decision we made as parents up until this point. So many Covid unknowns and with Anthony’s respiratory illness history were we making a huge bad decision?
This past July Anthony had his one year ABA Anniversary. The developmental growth we have been lucky to witness and be a part of has been incredible to watch. When he started “school” Anthony was: army crawling, providing minimal contact, not indicating what he wanted, very sensitive to loud sounds, would not play appropriately with any toys, stimming (getting over stimulated) very easily and he would stim out of control, diet became minimal, he was screaming at doctor’s appointments and I would have to bear hug him just so that the doctor could listen to his chest or look in his ears, haircuts were a nightmare, and so much more. In just one year my boy doesn’t need the headphones for loud noises, playing appropriately with some toys, being attentive when doing activities and listening to others, points to things that he wants, the stimming has decreased significantly, doctor’s appointments are a breeze! We have had so much growth with him! His ABA team are my heroes’. They are amazing human beings and we are extremely grateful to have them on our team.
Like all children, Anthony has special needs. They aren’t the exact needs that I thought they were going to be, but he gets what he needs and that makes him the most wonderful, bravest, strongest, smartest, hardest working boy I know. A friend told me this and the words are what snapped me out of my denial: “Kat, he has a new label, but he’s still the same Anthony. The label did not change who he is.” I am a mom who is still learning about this dual diagnosis journey. As I continue to learn I will do so that I can continue to provide support for my child and his “special needs”.