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

9 days

So here we are – 9 days until the Boston Marathon. 

Last Saturday, I headed out for my last long run before the start of my taper – 20 miles. My team mates had run the Hop21 the week before, from the starting line at Hopkinton to the top of Heartbreak Hill in Newton. I ran with them, but per my physical therapist’s orders, I stopped after 16 miles. My plan was to peak the next weekend. It wasn’t easy to drop out of the Hop after only 16 miles, but after 16 miles I felt reasonably good, like I could have kept running, so ending on a high note was nice. I felt excited for the following week.

Team Flutie before the Hop21

I decided to head back into Boston for my 20 miler so I could run it on the course. My teammates run most Saturdays from Copley on the course, then turn around and run back. I planned to run with them, but just go further than the others. 10 miles out to Wellesley, then turn around and run back, up Heartbreak Hill and back to Copley Square. I wanted to experience those blasted hills I’ve heard so much about.

I guess it is only fitting that my longest run of my training was a complete disaster, because this whole training experience has really just been a disaster. I ran from the finish line backwards on the course, which means I ran uphill for six miles. But I felt ok. As I reached the Johnny Kelley statue and snapped my picture, my teammates started to turn around and head back. While I was

Last Saturday at mile 7

running, I reflected on how difficult it has been for me to see my teammates succeeding, healthily running, improving themselves, and looking forward to their impending marathon finishes. I have struggled for the last three months. After tearing my quad Jan. 12, I took six weeks off running. I struggle with depression and anxiety, and running is a big part of managing it. So as a result, my depression flared up as well as my physical injury. Then once I got back to running, I found that although my stamina was ok, (thanks to a whole lot of lap swimming) my body was certainly not healed. It seemed the quad tear had healed with scar tissue pulling on my knee. Whenever I ran, I had real pain in my knee, as well as in my quad and shin. Because of this, my pace had slowed way down, and my overall pace was slowed down more by the need to utilize run/walk intervals.

I have been under the care of numerous doctors and specialists, including my physical therapist, acupuncturist, chiropractor, and orthopedist. I’ve had all the tests, xrays and scans and have the OK from all these individuals to keep running. Over a week ago I visited Newton Wellesley hospital where a leading surgeon gave me a cortisone injection in my knee. I hoped this would solve enough of the pain to get me through my training and enable me to complete the marathon. But alas, the injection has done nothing, and I am in just as much pain as before.

One of the great things about being a part of the Charity Teams group (which is about 300 runners comprised of different Boston Marathon charity teams), is that there is a ton of support. Facebook groups, group runs etc. But when you’re injured, and you either can’t run at all or can’t run as well as you’re used to, the FOMO can be intense. I’m embarrassed to say that I have suffered from some serious jealousy. I haven’t been able to participate in many group workouts, and when I have, I’ve been isolated due to my pace. My teammates are wonderfully kind and supportive, but I feel like I’m weighing them down. In hindsight, I realize that I retreated further away, trying not to check the Facebook group page, and not wanting to attend group events, because it honestly just hurt so much to be around healthy runners.

Last Saturday, as I started to run by myself and the aid stations ran out, I realized it was the first warm(ish) day of the season. It was pushing 60 degrees, and when you’re used to training in 10 degree weather, you feel it. I also had chosen not to run with my Camelbak, instead using my hydration belt with two small six ounce bottles. I had learned the previous week that Cambelbaks are not allowed in the marathon, which makes perfect sense as they are a security threat. Anyway, I was surprised by how quickly I was going through water, and how hungry I was. Luckily I found a water fountain in front of someone’s house (oh Newton, I love you), and ate a Huma gel pack, but as I turned at the Newton Fire Station at mile 9, I still started to feel really crappy. 

I had felt exhausted going into the run, due to an intensely stressful few weeks at work and in my personal life. I’ve come to realize that I just have a stressful job and that’s not going to change, and in general I handle it well. But over the last month I’ve been crumpling a bit under pressure and am truly struggling to balance everything. There’s also a lot of strain trying to keep up with my kids, their activities, and school requirements. I haven’t been sleeping well and wake up exhausted with headaches. This morning, I woke up to find my left eye swollen and red. I know it’s partially due to my swim goggles which irritate the skin around my eye, but still - I look like Quasimodo. Awesome.

Members of the Flutie Team before our run last Saturday

Anyway…

My knee had been hurting during the whole run, but it always hurts and I’m usually able to manage the pain. My PT has been teaching me how to tell the difference between manageable and unmanageable pain, and so far I had made it work. But as I headed into mile 10, I started to really worry I couldn’t do this. Yet I continued. I’ve never cut a run short, and I couldn’t even wrap my mind around the concept of not finishing. I would finish – that was it.

I turned around at mile 10 and headed back. Past the firehouse and a right turn to start the Newton Hills. Hill one – done. Hill two and three, complete. Then I started up Hill four – Heartbreak. I was feeling like absolute shit. I was in so much pain in my knee that I thought I was going to throw up. I ran up Heartbreak, but then tried to go down the other side. My body just wouldn’t let me. My knee gave out and I fell. I got up and walked a bit, then tried again. Fell again. I knew I had to stop. If I kept going, I would do real damage and not be able to run the actual marathon.

I collapsed on the front steps of a Chestnut Hill mansion and wept, clutching my leg in agony and fighting nausea from the pain. I ordered an uber, but soon after I stood up and said dammit, I just cannot quit. I cancelled the uber and started running again. I fell again. The tiny rational part of my runner’s brain said, enough Jennifer. Just stop. Sometimes the right thing to do is to quit. I called another Uber. Eric in a grey Hyundai Sonata came and picked me up. I kept my earbuds in so Eric in the grey Hyundai Sonata would not talk to me. I knew that if Eric in the grey Hyundai Sonata tried small talk with me, I might just throttle him.

So that’s the story of my final long run. 15 miles. The worst run ever. I texted my PT and she told me she felt confident it had only happened because of the extreme uphills I had put my knee through, and that on the actual course I would be ok. Plus, I needed to change my fueling scheme, and would likely not be as run down physically and mentally on marathon Monday. We’d also incorporate some new exercises to further strengthen my quad and knee, and I’d rest during my taper and all would be ok. Another project was to focus on form, so that as I tired, my form would not be affected causing more pain. I thought she was nuts.

After everything I’ve been through, I finally felt defeated. I wanted to quit. I’ve raised the money, no one can take that away from me, who really cares if I put my body through this? The whole point of my running is supposed to be to have fun. I usually really enjoy running. I mean I love it, a lot. But I haven’t enjoyed much of my running over the last six weeks. I mean, I guess, I haven’t enjoyed it at all. It’s been miserable. It’s been really miserable.

So I went home. I cried, I showered, cried, ate, cried, and I slept. I rested. I saw my PT on Monday and again on Wednesday. I cried. I swam, I rested. Finally, I did start to feel a lot better. My PT is a gem and she really helped as she walked me through what had happened. She checked my quad and it was not re-torn as I had feared. She instructed me to run four miles Wednesday night, which I did. It was ok – I had pain in the knee, but it was a lot better.

Over the last week I’ve done some serious thinking about if I even want to do this race. People tell me that I can crawl across the finish line if I have to. But what I’ve realized about myself is – although I really do respect people who crawl to the finish, it’s just not me. I’m not sure I’m a person who can crawl across the finish. I’m a runner, not a crawler. My gut reaction has also been that I don’t like to toe the starting line of a race I’m so unsure I can finish. The possibility of a DNF is really hard for me to swallow. However, through my contemplation, I’ve come to realize that, whether we know it or not, every race we start has a possibility of ending unfinished. What about the mighty Deena Kastor in the 2008 Beijing Olympics – a favorite to win, and after only three miles, her foot broke and she was forced to withdraw. Deena was at the peak of her physical and mental strength, and had no idea there was anything wrong with her foot. Yet it happened. Isn’t this a metaphor for life? We really just don’t know what is going to happen. But if we just give up, how can we possibly find joy in anything? 

At my saddest moments, my mind turns to the 2013 Boston Marathon. All those people who trained for five months and woke up on Patriots Day anticipating their own Boylston moment, but were forced to DNF because of a terrorist attack. And of course the three people who died and hundreds who were injured. Those poor people would love to be me with a superficial injury to my knee. If my biggest problem is whether I can finish some silly race, I guess I’m pretty fortunate.

Making the choice to train and run a marathon is certainly a monumental and unique endeavor. But in ways I did not anticipate, the stakes are much higher with the Boston Marathon than the other two marathons I have run. Obviously it’s hard to get into, everyone knows that. Either you qualify or you go through the arduous process of being accepted to a charity team, and then raising all the money. But beyond that, I find the experience of Boston to be very exposed. I feel like everyone is watching. Anyone can look up your bib and track you. My parents and my mother in law are all visiting to watch me run. Even my coworkers will even be coming to the finish line, and my teammates will be there too. The other day at my community center, someone I don’t know told me “good luck with the marathon!” 150 people have donated to my fundraiser, bringing in over $11,000. When you think about it, running something like Boston is amazing in ways many people don’t initially realize. For a non-elite athlete with a job and a family to voluntary put him or herself out there, with such a high probability of failure, is amazing. To voluntarily walk up to the start line is almost like shouting “Hey, millions of people watching, I might fall, I might break bones, I literally might SHIT MY PANTS, but I’m putting myself out there for a good cause, to try to accomplish something great, so here I go!” In today’s world where we’re all pretending to be smarter, more confident and more successful than we really are, subjecting oneself to that kind of vulnerability is absolutely incredible.

Sully last Sunday at Preston Beach

So there it is. It’s been hard for me – I went from being able to run 10 miles at an 8:30 pace to struggling to do 15 at 11:00. I’m not sure if my body will hold up for the marathon, but I guess I’m going to try.

9 days ya’ll. 9 days until I either finish the Boston Marathon, or drink like 10 margaritas and pass out. Or maybe both? I’ve got options…

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