Sunday, February 2, 2014
Receiving Diagnosis Number Two
My Dearest Caleb,
Although we had participated in therapy from the time you were born, we did not realize that something wasn't quite right until you were three. Not only were you not reaching your milestones, you were falling further and further behind. Dad and I thought it was due to you being connected to the ventilator twenty four hours a day, but all of your specialists assured us that other children with your breathing disorder continued to make progress in all other areas of their development. Despite their warnings, we continued to hold fast to our view.
Over time, though, we began to see behaviors that indicated there might be another problem. Whenever you were excited, you would flap your hands in quick succession; you were still nonverbal, and you were becoming obsessed with certain activities. Whenever we would pass an elevator, you would point, indicating you wanted to ride. If time would not allow us to take you on the elevator, a full blown tantrum would ensue. At dinner time, if we had six muffins but only ate five, a tantrum would ensue. And if we passed a gas station and failed to stop, another tantrum would ensue.
As we began to question the therapists and were referred to a psychologist, the idea of autism arose. When you were first born and we discovered that you had the breathing disorder, dad's one comment was, "I am just glad it is not autism.” All we had heard about autistic children was that they could not connect on an emotional level to their caregivers. Nothing sounded more devastating than not being able to shower you with love and have it reciprocated. Dad had grown up in a family with lots of affection and he desired the same for our family. Therefore, when all of the reports began coming back, and we were told over and over that you had autism, we were devastated.
"How could you have autism?" we questioned, when you already were diagnosed with a breathing disorder. Your doctors had warned us that the presence of one diagnosis did not lessen the possibility of another, but we hadn’t wanted to believe them. What would this mean for our family and for you? Wasn't it enough that you already had to have a nurse with you whenever we weren't with you? Or that you already had to work so hard to compensate for the breathing disorder? As we began grieving for you, we also began grieving for ourselves and for what this would mean for our family.
Autism is so different than your medical issue. With your breathing disorder, everything is very concrete. If your oxygen levels are low, we increase your settings, if the alarm sounds, we reconnect you to the ventilator. Although there are high levels of stress related to these things, we feel confident in our ability to care for you and meet your needs. Autism is a whole other story. There are no instruction manuals that tell us why you get so upset if one muffin is left. Nor is there a clear understanding of what is causing your lack of verbal communication. There are so many unknowns. With your breathing disorder we know that our goal is to keep you well ventilated. But what is our goal with autism? And how can we reach it if we can’t even define it?
As the years have progressed and you have grown, we have all gradually accepted this diagnosis as part of who you are. We have not yet been able to embrace it, as some families do, because a part of us still grieves for all that you cannot do. At seventeen years old, there is still very little verbal communication, your safety awareness remains poor, and your ability to control your emotions remains difficult. With all that being said, you have an amazing passion for life. You are not restricted by social norms as we are. You express excitement with true abandonment. You love to snuggle with us and are open to receiving hugs. And although so much is locked up in your brain, I believe you are filled with much to share.
Over the years we have had many ups and downs. The grieving over this second diagnosis has lessened, resurfacing only occasionally now. But despite it all, we love you Caleb and hope that we have been able to express, in a way that you understand, what a true blessing you are to all of us.