Diagnosis Shock

I brought my son Dyllan to the doctors for his 15 month checkup and I was 2 weeks away from giving birth to my daughter. I was filling out the ASQ and M-Chat and started questioning why i was answering some of them with hesitation. My heart was pounding and I remember thinking, "is this bad that I'm circling that he only makes eye contact "sometimes". Does he follow your finger when you point to something across the room? Does your child answer to his name? Ugh. "No." "Sometimes" The doctor came in and started going over my answers and I felt it in my gut something was not right. After a lot of discussion, he gave me the number to early intervention. At the time, I had no clue what that even was. I was sweating and running out of breathe trying not to cry long enough to make it back to the car. I called my husband and burst into tears. Here I was alone with my son, 9 months pregnant and realizing something was a little "off" with him. My husband knew as he heard me crying that something with Dyllan was not right. I could barely drive home. I stared at him in my rear view mirror thinking how could this be happening. He was playing with his feet and smiling. I remember thinking how could it be possible that anything was wrong with my son. I dreamed for him and did not have an easy time getting pregnant with him. He was my second pregnancy. My first pregnancy took about a year and resulted in a miscarriage. I was devastated, so when I found out I was pregnant again I was ecstatic. Even more so when we found out he was a boy. My head was spinning and I can remember researching what could be wrong. I had barely heard the word Autism, let alone understand what it was. I had two friends with younger brothers with "special needs" and couldn't recall what their diagnosis was or if they ever told me what it was. How naive could I be. I literally never thought that one of my children could have a developmental delay or carry a diagnosis that would stay with him for the rest of his life. Right after Dyllan was born, I was watching Real Housewives of New Jersey and Jacquline Laurita was talking about her son Nicholas and receiving his Autism diagnosis. He had little to no speech after regressing. I was sad and in my mind thought that could never happen to my baby. This was my biggest fear and staring at this even tempered baby in my arms I told my husband I don't think I could handle something like that.

Now here I was, in my biggest fear and nightmare imaginable. After a couple of days of sleepless nights, I called Early intervention and they arranged to come to my home in a few weeks.

I gave birth to my daughter Jazlynn and two weeks later Early intervention was at my home for an intake exam. It was overwhelming having a bunch of women i did not know watching Dyllan and questioning me about every little move he made. Nobody was saying what could possibly be wrong and at the time I didn't think the behaviors he was showing were odd or not "typical". I was a first time mom. How the heck was I suppose to know him flipping a car over and spinning the wheels wasn't neurotypical. I thought maybe he was struggling with speech, eye contact and not answering to his name because maybe he just wanted to ignore me and was more interested in what he was playing with. I didn't realize they were going to dissect him and that the behaviors he was showing them were repetitive behaviors and different from typical children. At the end of the exam we sat on the floor and they handed me a copy of the paper they had been writing on the entire time. My heart sank to my stomach. He was eligible for services due to significant delays in the areas of Adaptive, Personnel-Social Cognitive and Communication skills. Shortly after we started Early Intervention services. It was a tough pill to swallow. We were overjoyed with our daughter being home and now it was shadowed by thoughts of our son having a developmental delay. We were fortunate and got an appointment right away with Floating Hospital for Children at Tufts Medical Center. Most families wait months sometimes up to a year waiting to see a doctor for a thorough diagnostic and developmental appointment.

On February 27, 2014, my world flipped upside-down. My son was barely 19 months old. I was breastfeeding Jazlynn, who just had lip and tongue tie surgery, sitting in a kids chair in the exam room while I watched the doctor perform her "test." I was staring at my husband as I heard the words Autism Spectrum Disorder, Sensory Processing Disorder, receptive and expressive language disorder. I couldn't breathe and could barely swallow. My head was ringing. I had barely ever heard the word Autism let alone fully understand what it had even meant. To me I saw a sweet boy that liked to walk on his tippy toes. I saw a boy who was very particular in the way he played with each toy. I saw a boy who was picky with food and a little shy. In my eyes, he was a happy boy who liked to dance and couldn't sit still. He was super affectionate and loved to snuggle. He was easy going and so loving. As she explained why she gave the diagnosis, the pain I felt was unimaginable. I barley heard anything she said. I was watching her talk, but literally heard nothing. I felt dizzy and was hoping I was going to wake up from this nightmare. It was like I had just lost a child. But in reality, I did. I lost the child that I thought I had. I lost the boy that I thought was going to grow up and play baseball. I lost the child that I thought one day I would help pack up and go off to college. I lost all hopes and dreams of watching him start a family of his own and give me my first grandchild. The grief and pain I felt that day and in the coming months was nothing I had ever felt before. I thank God for my daughter at the time. If I didn't have her to focus on and distract me, I may have burst from the sorrow that was filling my heart and body. I didn't understand that these 2 babies, so beautiful and innocent were going to be the biggest challenge of my life. My husband and I spent countless nights staying up and researching what Autism was and what we could do. It put a strain on our marriage. We were both angry and sad because the family we thought we had was gone. The more we researched the more we cried, it only made it worse. The pain we experienced over and over and over every time we had to tell a friend or family member he was diagnosed with Autism was brutal. Having to explain something I didn't even understand in the first place left me lost and sick with anxiety. I felt like we were alone. I felt like I was drowning and no matter how fast I swam I could never make it to the surface. We had to deal with the comments like, "maybe he will grow out of it" and "everything happens for a reason." And worst of all, "my friends kid didn't talk until they were 5" We had to fakely smile and pretend we weren't dying inside. For a few years it was easier to hide. When people would ask him for a high five or to say hello, Dyllan wouldn't respond and we would just tell people he was shy, but as he grew his language didn't. In fact it regressed, so we started to let the world know he was Autistic and every time we had to say it it was like knives into our souls. I wasn't ashamed of him, but it damn near killed me to say it outloud. My son is just about 7 and my husband can still barely say Dyllan's name or the word Autism without getting a lump in his throat and tears in his eyes. We often wondered what people would talk about as we walked away. Friends grew apart from us and as much as it hurt we understood. It was hard to understand Dyllan wasn't like other kids. We had to watch him closely. He didn't understand to stay close to us. He lacked safety awareness. Barely answered to his name. It grew more and more difficult to bring him to unfamiliar places. People didn't understand it was literally pointless to go to their home because we would have to take turns chasing him around and he didn't interact with other kids. Invites and calls became less and less. Everyone always said "Don't worry about it there will be plenty of people to watch him" and every time that comment made me cringe. But I totally got it. It was hard to understand Autism and how he was unless you had to experience it first hand. I was that person too. I knew nothing about it until I had too.

We started services with Early Intervention and ABA and we watched him progress in some areas in regress in others. But I loved him so much and Jazlynn thought he was the greatest brother in the world. As she grew to crawl, she followed him everywhere. She laughed at everything he did. She was happy and we watched her do things that Dyllan never did so at the time we felt some relief. In the back of my mind I was thinking there was no way I'd have a second child with Autism. She was doing great and was on track meeting all of her milestones. After her 1st birthday we learned we were pregnant with baby number 3. We were scared but with Jazlynn doing so great, I wasn't worried. She sang songs, answered to her name, waved to everyone, blew kisses, and was very interactive. While everything seemed to be going great, Jazlynn fell ill after her 15 month checkup and was never the same. She had fevers for a week and was almost unresponsive and she stopped eating. We were in and out of the doctors for a month. She lost a lot of language, she stopped looking for us and became aggressive with self injury behavior like banging her head. I thought maybe it was a phase and she'd grow out of it. In the coming months she seemed to be improving and we thought maybe she would benefit with Early Intervention and just needed an extra boost. She began her own services and qualified because of regression in developmental skills, particularly with respect to language and social communication. Dyllan was in preschool all day in a special program called NECC (New England Center for Children). It is a Partner Program that is comprehensive ABA based. They took good care of him and he was doing amazing learning to speak with PECS.

We thought we had everything under control and things were looking up. Then during a blizzard, shortly after we announced our pregnancy, I started bleeding. It took my husband a couple of hours to shovel enough so I could get to the hospital. When I got there they confirmed that I had lost my baby and they believed the heart stopped beating somewhere between 11 and 13 weeks and that my body held on to the baby for sometime without showing any signs of the loss. I had an emergency D&C and stayed at the hospital for the rest of the day. I was alone at the hospital due to the snowstorm, no-one was there to watch our kids so my husband stayed behind. It was awful. I called my younger sister as I waited for the doctor to come in. I was angry. Hadn't I been through enough heartache. As I laid there alone, I was thinking how hard it was to have a family. I thought I would just have kids and all would be well in the world. That couldn't be farther from the truth.

The next couple of months we focused on helping Dyllan and Jazlynn. They were both doing great and we were awaiting an appointment at Boston Children's for an evaluation for Jazlynn. Being an autism family and having Early Intervention and ABA at our home twice a week became the norm for us. The life I had before children was gone. I didn't return to work after Jazlynn was born. It became too much between services for Dyllan and Jazlynn not being able to latch on to a bottle, I couldn't go back. I came to terms with that and our kids were more important. My kids couldn't do daycare or be watched by someone and I became ok with that too. We created a routine and schedule and in our own little space we were happy. As happy as we could be, because quite honestly the heartache never leaves completely.

June 1, 2015 my world was rocked once again. Two weeks prior we had Jazlynn's evaluation at Boston and again we had to sit in a tiny room watching a team of Doctors nit pick everything she did. From time to time they would turn around to let me know she had a lot of language and some good skills. I believed in my soul there was no way she could receive the same diagnosis as Dyllan. He wasn't able to do half of what she was doing. At the end of the testing they had let us know we would have to come back in about two weeks to go over results. I was nervous but thought she wouldn't receive any diagnosis. In those two long weeks, I learned I was pregnant. Here we go again. Another pregnancy not planned and again at a crucial time. Our appointment came, and again I went numb. "Based on report of her history, observations, and her performance throughout the evaluation, Jazlynn's behavioral and developmental profile meets criteria for an Autism Spectrum Disorder." I cried...and cried right in the room in front of everyone, then I questioned them. Dyllan and Jazlynn are no where near the same. How on Earth could they have the same diagnosis? He was nonverbal and she wouldn't stop talking. My world shattered that day. I couldn't believe I had to go through this again. How would I explain to family and friends that Jazlynn was also Autistic? Let alone also tell people I was pregnant again. What was I doing wrong that would cause my sweet babies to have Autism Spectrum disorder?

On the way home I couldn't stop crying and my husband could stop talking about how fearful he now was about our unborn baby carrying the same diagnosis. For awhile we stayed silent about her diagnosis. And when we did tell people, it was always the same response, "she's nothing like Dyllan!" This is why it is called Autism Spectrum Disorder. No 2 autistic people are the same and we became more and more educated about the spectrum disorder. I attended meetings and specialized support groups. Jazlynn had Early Intervention and shortly after started ABA. My pregnancy was stressful because of our fears. We decided to not find out the gender and on January 27, 2016, I gave birth to our third baby Clyde. Our family felt complete and by this point I felt like I became an expert on what to look for. We over analyzed every little thing he did.He was interactive and funny and just to be safe, we contacted Early Intervention. They came to do his evaluation and at the end told me he DID NOT qualify. I never cried so hard in my life. I was so happy and finally felt at ease. A neurotypical child, I couldn't believe it. We went on to have our fourth and final child in March 2018. He is the sweetest, happiest little guy I could ever ask for. Loves to play and learn and at this time shows no signs of developmental delay or having Autism Spectrum Disorder.

Autism is very much a part of me and always will be. It never gets easier telling people I have kids on the Autism Spectrum but I have accepted it and to me thats good enough.