Joy in Pain

January 7, 2009
Today I’m visiting the fourth doctor in the last six months. Most are the same; light blue walls, uncomfortable wooden benches, and the stale air that smells of sanitizer. Parenting magazines are the only ones in the racks on the walls, as if to say “your child is sick, you must be doing something wrong.” Dr. Hahn’s office, however, is a surprise as close to pleasant as possible, given the circumstances. There are photos of different flowers on the walls, the chairs have cushions, and instead of parenting magazines they have Organic Gardening and Natural Home. Patrick is squirming next to me. His fidgeting has been worse lately. I know he hates the endless tests and inconclusive results as much as I do. I want to feel positive, to have hope that this doctor will be different, but after so many disappointments it’s hard not to feel cynical.

My son Patrick is one of my biggest blessings. I love to watch him grow and learn and play. Patrick is eight years old now and likes many things that are typical of young boys. He likes video games, especially Pokemon, and would play constantly if I let him. He is a gentle kid and loves playing with and caring for animals. Comic books are another obsession and he is always waiting for a new one to come out. Patrick does not like sports for the most part, but he follows his favorite baseball team, the Red Sox. At the same time he isn’t exactly like other kids. Patrick doesn’t play outside much, doesn’t like doing anything risky or messy, and he doesn’t relate to his peers. It kills me to watch him feel alone and different. He hasn’t been himself since he was three, and I know that sounds strange but there really was a distinct change from the child he was then, and the child he is now. Of course I still love him the same, and I will no matter what. I just want the best for him and I don’t know how to help him.

He was such a happy little boy. He was always laughing and soaking up everything around him. At two and a half, he could read and speak. Then at three he got another round of vaccinations and something changed. He no longer laughed at everything, but showed no emotion at all. It was like caring for a doll. All of his personality faded; he never even cried. As a young single mother, I was frightened. I had no idea what had happened; I was terrified to find out. When Patrick was five we went to the grocery store. I kept asking him what he wanted and tried to tempt him with different foods and sweets. All I got were blank stares; nothing could excite him. I cried on a bench outside the store for almost an hour. He just sat next to me, not asking why I was crying or even if we could leave. Its not his fault, and I know that. In fact, I blame myself. There has to be some cause; maybe I did something wrong when I was pregnant, maybe I fed him something harmful, maybe it’s a genetic problem I didn’t know I carried. Sometimes I think that even though he is so young, he intuitively knows that he should have a father and he resents me for it. I’m even afraid there is nothing wrong at all, and I’m just a bad mother.

Patrick began life with challenges. I was raised Catholic and never rebelled - until college when I began going out every night and partying with friends. That led to dating Rich, which led to Patrick. We never married, and Rich did not want to be involved in Patrick’s life. I always worry about his lack of a father figure. Children were never meant to only have one parent, and I never wanted that for my child. It’s my fault he doesn’t have a dad in his life. That is enough of a setback for him, but now Patrick has another problem to deal with, and what’s worse, no one can tell us what it is.

Five years have passed since Patrick began seeming different. Five long years and we haven’t found anything conclusive. Doctors say “there is nothing wrong, he is bored, he has ADD, no he has ADHD, there is nothing wrong”… I just wanted answers for him and a way to move forward and no one can give us that. We have seen every kind of specialist I could think of. My insurance doesn’t cover most of these doctors so I pay out of pocket, which is not easy to do on my salary. Patrick is my priority though, and I will do everything I can to help my baby. Unfortunately, nothing I have done so far has helped. I fear everything from a brain tumor to Lyme disease. That’s one of the hardest things, the fear. I just worry about everything. For instance, I’m currently worrying that I have put Patrick through another round of tests and questions for no results. Every time I take Patrick to a different doctor, the same thing happens. There is never a diagnosis, just more frustration. I don’t understand. If Patrick has to have this problem, why can’t we at least define it? Even though it breaks my heart, I have learned to live with my son’s apparent apathy and disinterest towards almost everything, but I can’t accept living with the constant feelings of helplessness, guilt, urgency, and confusion.

A young nurse walks over to us. “The doctor is ready to see you,” she says.

I take Patrick’s hand and we go to a small room and wait. Anxiety is making my hands cold and my breathing feel forced, but I want to seem calm. Finally Dr. Hahn comes in. We met three weeks ago for Pat’s testing.

“Ms. Anderson, we have the results. Your son has Asperger’s Syndrome”

Looking back now I remember being caught off guard by how straightforward he was. Every other time I met with doctors to talk about test results they beat around the bush until they finally admitted nothing conclusive had been found. I didn’t know anything about Asperger’s that day. I’d say I’m pretty much an expert now. It is an autism spectrum disorder that shows itself through difficulty in things like social interaction. Children with it are usually interested in few things, but those things are practically an obsession, like Patrick and his comic books. I think the reason it took so long to get a diagnosis is that Asperger’s has only recently been standardized for diagnosis. Its cause is still unknown, but like other types of autism, it is thought that the heavy metals in many vaccines can permanently damage something in these children. This is a lifelong condition. I wonder sometimes if he’ll ever make friends his own age, if this will hurt him when he goes to college and looks for a job, and if he will ever marry. I still worry about these things, but I’m learning to give these concerns to God. I know my son is not in any danger from this and while there is no cure, there are things that can help. Dr. Hahn recommended a gluten-free diet because he has seen it help with other patients.

Now Pat’s symptoms have lessened and he seems more like his old self. There are times he shows emotion and has a sense of humor. We have so much fun then. Last weekend we went out for ice cream, watched movies about the Pokemon (his choice) and the Amazon jungle (my choice), and played at playgrounds and parks. He laughed and ran around and had a good time. I know there are going to be bad days again, and times when it seems like nothing has changed, but no matter his current state, he is always the light of my life. Even when it’s hard to face another day that I feel disconnected from my baby, I am always grateful that I have him. I learn so much from him. Patrick has an incredible amount of self-discipline and compassion. Now that he is a little older, I notice how gentle he is with younger children. He is the same way with animals, quiet and careful. He is so sure of what he believes. Sometimes I am reminded of him as a two year old in the way that he seems to absorb everything. He never questions things and accepts everything and everyone. I admire that about him. We are getting through this struggle together and as long as we have each other, we’ll be all right.

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