Shortly after Lena was born, I went through a psychological rough patch. I decided that I needed to see a professional to help me sort out what was going on. I wasn’t sure if I had post-pardom depression or if the severity of Gray’s condition was just sinking in. I only knew that, as a fundamentally happy person, I was not feeling like myself. I felt frustrated, helpless and irritated with those who were closest to me. I remember telling Barry about my decision to seek counseling and his reaction. “That sounds like a GREAT idea! I’m sure you could really benefit from some objective advice.” So, clearly I wasn’t doing a very good job of keeping my feelings to myself. I made an appointment with a psychologist the next day.
I found my time with that therapist to be very enlightening. One of the things that she explained to me was called the “spiral of grief.” She drew a picture of a tornado-like spiral that was small at the bottom and large at the top. She told me to imagine my worst feelings of despair and frustration and loss and imagine that they were a wall next to the spiral (picture a vertical line to the right of the tornado).
So, the person who is experiencing the grief gets sucked up into the bottom of the spiral where the coil is tight and the revolutions are small. This causes the person to get slammed up into the wall over and over again in a very short time frame. This would be like when someone first gets devastating news. It can be hard to make it through even a day because the grief is so overwhelming and powerful. There may be short moments of normalcy or distraction, but they are quickly overshadowed by thoughts of the terrible situation at hand. Fortunately, as time goes on, we move our way up the spiral and the coil gets looser. It takes longer and longer amounts of time to travel around the spiral before hitting the wall again. We can go days, weeks and months without thinking about the grief. Additionally, the time between encounters with “the wall” is a chance to repair, get stronger and develop some perspective. It gives us time to do productive things that actually improve the situation instead of lamenting what we have lost or never had. That way, the next time the wall is swinging towards us, the impact is less jarring.
I think I have moved pretty far up the spiral at this point. Yes, there are days when I could burst into tears at any moment. But, those days are pretty rare at this point. As time goes on, I grow more and more comfortable with Gray’s autism and the prospects that it brings for our future. In fact, I think less about the future now than I used to. I believe that grief is something that can bog us down when we are unable to imagine our futures given our current situation. I’ve gotten more comfortable with the fact that I cannot control the future. And, I have gotten more comfortable with the fact that everyone’s future likely contains some pain and suffering. It’s inevitable that you and me and all of our children will encounter hardship of some kind. Although we can’t protect anyone from the future, we can insulate everyone. I believe that enjoying our present days and making good memories are the only way to battle grief and climb up out of the spiral.
Yes, Gray has lots of therapy each day after school and on the weekends. I hope that his therapy will help him to function better in the future, but I am not going to wring my hands about what might happen if he doesn’t get better. Instead, I will enjoy the free time that I have while Gray is in therapy and I will celebrate each little gain and prideful smile that he gives me when he learns some new skill there. Yes, I went to incredible lengths to get a service dog and now my son is attached to a canine billboard that announces his disability to the world. But, the improvement that dog has brought to our quality of life every day is worth any discomfort or extra effort that comes along with her. Yes, I have met with a financial advisor to make a plan for Gray’s future assuming he will always need care provided for him. I did not do this because I am giving up on him, I did this because I know that grieving over Gray’s condition and praying for a different outcome does not serve any of us. I did this so that I won’t be afraid of the future…it is secure no matter how Gray’s abilities improve or don’t.
So here is my message to fellow parents in my situation: If you are down in the bottom of the spiral, look up. It may be painful and disorienting as you wade through the endless evaluations and research different therapies and compare your child to other typical ones, but it will get easier over time. If you are closer to the top of the spiral and you find yourself “hitting the wall” because something happened today that reminded you of how impaired your child really is or made you fear for the future, you should know that the trip around the spiral is longer these days and you will bounce back faster than you imagined.
People often send me encouraging clips with video’s of kids and adults who have overcome the challenges presented by autism and now have something incredible to say. They send me stories about famous people with autism who made a mark on the world despite their awkward social skills or speech deficits. I know that these people mean well and are trying to offer me comfort and hope. But, the truth is, I don’t really need comfort or hope. I no longer mourn the loss of the son I thought I might have. Now, I can really enjoy Gray for who he is.