The Other “A” Word

About twelve and a half years ago, my husband and I were at an ultrasound early in our pregnancy. The technician took a long time to do the scan, which had me worried that it was bad news. She looked at my husband and said, “Sir, you might want to sit down. You don’t look so good.” Turns out he could see there were two on the screen before she told us. I was beyond excited that we were expecting twins as I had always wanted twins, and so was he once the shock wore off. About ten weeks later, we went for another ultrasound. The ultrasound technician took a long time again, but this time she spent it telling us how beautifully the boys were developing. We were feeling pretty proud of ourselves until the doctor came in and said, “I’m Dr. K. This is the worst kind of pregnancy you can have.” My first response was to ask him to send the ultrasound technician back in as we liked her and her message much better.

He explained that our boys shared a placenta and had some early signs of Twin to Twin Transfusion Syndrome. He terrified us with statistics that this only happens in one in a thousand pregnancies and without treatment the survival rate for both twins was less than 20%. He sent us home with a bunch of information to read and a follow-up appointment the next week to make a plan. I can vividly remember everything he said during that appointment even now, all these years later. We were scared and lived with that fear for a few days before we went to the next meeting ready to take action. I was put on a high calorie, high protein diet and modified bed rest. I started going to the doctor three times a week for non-stress tests and ultrasounds to weigh and measure both boys to be sure the discrepancy in their weights was not growing too fast as that would mean surgery to sever the placenta with a small hope that both babies would survive. The doctor, although I did not like him at first, ended up being the best person for us. He was always calm, clear, and direct. He gave us facts and kept us informed throughout the entire journey.  

If you are a foodie, like I am, you might think that a three-thousand calorie a day diet with protein shakes on top of it sounds amazing. I assure you; it is not. It was tough to ingest that much food with two babies taking up so much space and then just sit most of the time. At thirty-two weeks, my blood pressure was really high as my body was struggling to manage the stress of the pregnancy and the extra weight, so I was put in the hospital on bed rest.

The whole pregnancy taught me a lot about anxiety. Most moms feel pressure to be sure they are doing the right thing for their baby, but this was a lot more pressure than usual. I worried every minute of every day after that second ultrasound at nineteen weeks about whether or not I was eating enough, was I moving too much and did I notice subtle changes in my body or drastic ones both of which meant I was supposed to get to an emergency room immediately for surgery. I had intermittent contractions throughout the pregnancy and would panic every time that it was too early for our boys to be born. I felt uneasy most of the day trying to control things that were completely out of my control. My anxiety made me feel totally helpless.  

While in the hospital, the doctors would come into my hospital room each morning and say, “Today might be the day!” They would do a full assessment of all three of us. We did that every morning for twenty-five days in a row before it was finally the day we had two healthy baby boys at thirty-six weeks. They ended up weighing 5 pounds 2 ounces and 7 pounds 2 ounces. The two-pound differential was significant, but the extra protein and calories I ate helped our little guy, Nick, to survive. Our Henry had some jaundice, but other than that, they were both very healthy. We had taken tours of the neonatal intensive care unit and met with many specialists to prepare for challenges we all assumed would be there at birth and were thrilled not to need any of those supports. 

I was so relieved when we went home five days after they were born, that shortly thereafter my anxiety went away. Don’t get me wrong; we all feel anxious sometimes, but my stop-me- in-my-tracks debilitating fear of the unknown went away. My husband and I were so excited that we made it through the pregnancy that we just assumed we would have nothing but smooth sailing from that point forward. We were in for another shock when at three for Nick and four for Henry, we realized our boys had disabilities. I wrote about what a challenge it was for me to accept Nick’s diagnosis in another post called “The ‘A’ Word.” It took us a few years to find the right doctor for Henry and get an accurate diagnosis of anxiety. That “A Word” scared me a lot less.

Henry’s verbal skills have been strong since he was very young. I worried less about him because he has always been able to talk about how he is feeling, so people don’t tend to underestimate Henry when they meet him. Although, he has episodes of anxiety that are huge. Someone asked me to explain it and I said it feels like that moment when you know you are going to get in a car accident. There is nothing you can do to stop it, but your mind over processes everything as if you were in slow motion. I have only been in one serious car accident in my life, but I remember every moment of how scary and out of control I felt just before the cars made contact. It was similar to how I felt often during the pregnancy. Henry has moments where he gets completely stuck and can’t move forward as his brain over processes everything that is happening. It overwhelms him, and he panics.

Anxiety as an “A” word had me less concerned that his relationships with others would be defined by his label than when Nick was diagnosed with Autism. Shelley Moore is one of my favorite people to follow on social media as she has a lens on inclusion that is amazing. She puts out these videos called Five Moore Minutes, which are hilarious and also have incredible messages about the teaching and learning of all students. Shelley said something in a TedTalk years ago that has always resonated with me as a parent and an educator. She said, “If I don’t presume competence, then I am the one who is disabled.” I know people presume competence for Henry and see that he just struggles sometimes even though his version of struggling is far more intense, frequent, and vocal than most people’s. I don’t always know they presume competence for Nick when they find out he has Autism, which is where that label was so much harder for me to accept.    

This time at home has been challenging for our boys in some ways and good for them in others. Henry is feeling a heightened sense of anxiety. He is way more emotional and quick to get distracted from tasks. One of his fears is getting sick, so we talk honestly about what is happening in our world to help him understand it. We are fortunate that his therapist has still been able to see him safely during this time to remind him to use the strategies we have been working on since he was very young and to learn more ways to cope with new fears and worries. We spend a lot of time sharing the facts as best we can, taking many deep breaths, dancing it out to our favorite music in our kitchen, making lists and charts about the significance of whatever problem he is facing to help him put it in perspective, and watching a few extra movies just to ease the stress of the harder days. 

On the way home from an appointment recently, he was quiet in the back of the car for a long time. After some prompting he finally said, “Mom, I really wish I didn’t have one of those brains that worries so much.” I replied that while that is really challenging, his worry brain also makes him care a ton about other people, which is beautiful. His whole face lit up, and he said, “Mom, I never thought my worrying had a good part, thanks.” It was so important for him to hear that I see him from an asset-based lens. He knows how hard it is to have anxiety. Now, he also knows it brings something great in that he is always looking out for others and trying to make sure they are okay. We have to remind him that he can only control his thoughts and feelings and offer people help without worrying about whether or not they will take it, but that never stops him from caring about others and trying to help.   

I frequently think about that conversation in the car and how proud Henry felt at that moment. We are all surprised by which learners are thriving in this new kind of learning and who is struggling. How can we continue to presume competence for every single learner and find out what assets they are discovering about themselves that we want to help them carry forward? How do we presume competence, but know that learners may also become competent at new things that are not typically assessed in school? How do we help all learners see and find their assets and know that having new struggles during this time does not mean they are incompetent?  

This is all new to us, and we are all doing our best each day. We all have good days and bad days, but we also have the chance to discover a bit more about who we are and who we want to be. I’m trying to help all three of my children find those parts of themselves that they didn’t know were there, acknowledge and accept worries and fears, and try all kinds of new things. We know we have learners developing anxiety and depression at alarming rates, especially the longer this isolation goes on. We need them to know we can offer support, believe in their competence, and see all of their assets no matter how challenging things get. That is an essential way that we really can be all in this together.