One Year Ago Today

One year ago today, my son Sully was diagnosed with Autism Spectrum Disorder. At the time, I saw the diagnosis process as difficult, frustrating and scary. But now, one year later, we have the gifts of perspective and knowledge, and I am grateful we persevered and got the answers Sully needed.

Kevin's fair complexion and naturally youthful
looks successfully mask the utter exhaustion
felt in this photo.

Our journey to diagnosis started very soon after Sully was born. I worried about autism since almost the very beginning. I just always had a feeling something wasn’t right. Sully was a difficult baby. He screamed almost non-stop and was constantly sick. Most of my memories from his infancy involve my feelings of inadequacy, exhaustion, and fear. By the time he was nine months old, Sully had had so many ear infections that it was impossible to keep an accurate count. We tried everything to keep from having surgery, but at 10 months old Sully had his first operation for ear tube placement. I have always reminded myself that we are lucky because Sully hasn’t had serious illnesses or surgeries – my heart goes out to families battling pediatric cancer and other terrible conditions. But the first four years of Sully’s life did seem like unending parade of ailments and doctors’ appointments. He was constantly using a nebulizer to be able to breath due to pediatric asthma, and regularly saw an asthma specialist. He developed strabismus, which means his eyes started crossing. He’s been seeing a pediatric ophthalmologist since he was six months old and wears corrective lenses to keep his eyes straight. By the time he was five, Sully had had six surgeries on his ears and adenoids. Due to the chronic ear infections, he had hearing loss and his language was delayed. He sees an ENT and hearing specialist and used Early Intervention services until three years old.

As Sully grew, I began to worry more and more about his social and behavioral development. Activities like music and swim classes or birthday parties, which other parents seemed to enjoy with their children, were stressful for us. Sully would refuse to participate and have meltdowns. People kept telling me it would get easier, but it never did. They said, when he turns four it’s a big turning point, the behavior will get better. Four came and went, and things didn’t get easier. Then it was five, but no change. As a mother, sometimes I wanted to tear my hair out. I couldn’t understand why everyone else seemed to have control of their lives and their kids, but I just couldn’t seem to make it work. The hardest part was that no one seemed to be listening to me when I tried to express concerns. The pediatricians brushed my questions off. They said he has great eye contact, he speaks well, and the hand and leg flapping is just a tick that will go away. But it didn’t go away. The truth is that any given doctor, provider, or even teacher sees a child a very small percentage of their day-to-day life. They only see a snapshot of who a kid really is. I never could understand why my opinion seemed to be discredited, just because I wasn’t a medical professional or an educator. In hindsight, I wish I had stood as more of an advocate for my son earlier. I learned too late that I needed to advocate more strongly for him and trust my intuition as his mother.

Credit: Victoria Dosch Photography

Finally, I found a therapist to work with Sully to help with his anxiety and social issues. She seemed to see what I was seeing, and recommended we take Sully to see a neurologist. I talked to the pediatrician and put my foot down – they needed to submit the referral. They sent me to a neurologist nearby, and I called and called many times, but they never answered or returned my call. I then asked the pediatrician to send me somewhere else, which they did, and I had a similar experience. Then, I asked local mothers for recommendations and narrowed it down to the pediatric neurologist I wanted to see at North Shore Medical Center. Once I got the referral and called the office, we got in to see her pretty quickly. We went in for the appointment and filled out a bunch of paperwork, and Sully and I met together with the doctor. Sully was distracted and I didn’t really feel the appointment was that useful. However, the Dr. did say she wanted Sully referred to the department upstairs that would do the full testing which lasted over the course of two appointments, for a total of about five hours. She told me she thought Sully had some sort of anxiety disorder, but she didn’t feel he was on the autism spectrum.

As soon as the appointment was over, I got the necessary paperwork from the receptionist and filled it out right there to get Sully on the wait list for testing. Lizzy and Sully tore apart the waiting room while I filled out a monotony of the same questions I felt like I had been filling out since Sully was born – does your child have difficulty expressing his/her feelings? Does he/she maintain eye contact when speaking to you?

Anyway, then I waited a couple months. Didn’t hear anything. So I called. They had NO RECORD OF MY KID. They had lost the paperwork. AWESOME! I filled out the paperwork again. This time, I copied it before I gave it back to them. Right after I sent it I called again to make sure they had received. Yes, they had the paperwork.

So I waited again. Didn’t hear anything. Called again. Oh, we’re missing such and such form.

ARE YOU FREAKING KIDDING ME???

All in, we were on the wait list for eight months for testing. Eight months? To me that makes no sense. That’s eight months we’ll never get back. Those eight months in school for Sully were awful. We didn’t know what was wrong, we didn’t know what to do. We couldn’t get Sully the services he needed, as he didn’t have a diagnosis and didn’t qualify.

Once we got the call and got scheduled with the doctor, things progressed more quickly. First, my husband and I met with the Dr. to discuss how the testing would work. Then, two separate testing days were scheduled for Sully. The staff and doctors were very nice and we had a good experience. Sully seemed to do well on both days of testing. After the two days of tests, we scheduled another time with the Dr. for just my husband and me to talk over the results.

I remember when the Dr. said, I’ve given Sully the diagnosis of Level I Autism with a secondary diagnosis of general anxiety. I remember feeling very calm. It was like her words went right through my like vapor. What had she just said? What? WHAT? I listened and took careful notes. I nodded and asked questions, but I felt numb all over.

After the meeting concluded I asked for directions to the restroom. I remember going into the small quiet bathroom and thinking to myself, wow, that just happened. The thing I’ve been dreading for five years, the thing I’ve desperately needed more information about, but simultaneously desperately did NOT want to hear, I just heard.

But I was surprised by how devastated I did not feel. Having someone tell you your child has autism does not change what you see when you look at your child. Sully was the same to me, I loved him just the same. I didn’t feel any different. I had often wondered and worried that some day a Dr. would tell me there was something wrong with my child. I had imagined I would feel devastated – that I would go home and cry and want to retreat from life. But when it did happen, I didn’t feel that way at all. I remember standing in that little green bathroom, and thinking, now it all makes sense. A small part of me wanted to run out and scream SEE I AM NOT CRAZY, THIS HAS BEEN REALLY FUCKING HARD! A small part of me felt relieved. I had often felt broken as a mother, like I was incapable. I felt like I couldn’t handle my child, and I hadn’t realized that was because he needed to be handled differently than many other children. Because everyone had brushed off my concerns for so long, I thought the fault was with me as a mother.

Once you receive an autism diagnosis, it’s difficult to know exactly what to do from there. When the doctor diagnosed him, I wanted to begin a concrete plan of action. I asked the Dr. what to do from here – she suggested social skills groups, therapy, and to begin working on the IEP with the school. I asked if there would be any follow up appointments with her, and she very kindly said no. So we said goodbye and I’ve not seen her since. Very strange in many ways…

After the diagnosis, we didn’t want anyone to see Sully differently. Kevin and I took several weeks to tell anyone. We worried that once people heard “autism,” they’d think there was something wrong with Sully. Or that they’d believe he couldn’t do certain things because of his diagnosis. I didn’t want autism to be a “crutch”. I knew there were a lot of common misconceptions about ASD, and I wanted to protect my baby from that. I worried that if his friends’ parents found out he had ASD, he wouldn’t get invited to birthday parties and playdates, or that people would treat him differently. But over the last year, I’ve realized that part of the responsibility for changing that perception lies with me. By talking about our experiences, I hope to change the misconceptions and improve the stigma around ASD.

I was obviously very frustrated by how long it had taken to get the diagnosis. I’m not really into regrets – I like to learn from mistakes and try to grow. Instead of looking back and regretting, I try to look forward and learn. But I do truly regret not pushing for more answers earlier for Sully. He didn’t get a diagnosis until he was five years old, even though many children can be diagnosed at three. In those two years, he missed out on valuable services that could have made life a lot easier for us all.

I would say that I can’t believe it’s been a year since Sully’s diagnosis, but that wouldn’t be true. It feels like it’s been longer than a year because he’s grown and changed so much. I was so fearful to get a diagnosis. But in reality, it has set us free and opened so many doors for Sully to excel. Thanks to his IEP and excellent teachers, he has the help and support he needs at school to succeed. He’s doing wonderfully, loves math and reading, and has many friends at school. As parents, we feel like we understand Sully better.

As I said, I like to keep moving forward and improving myself and the lives of my family. As I look to the future, I know that Sully has a full and bright life ahead of him, and that the last year is only the beginning of his beautiful and unique story.

Credit: Victoria Dosch Photography