It’s Not Your Fault.

“He’s just so shy…His confidence is so poor…I see this often…His test scores just aren’t where they should be. I just think you’d be wise to have him evaluated.” I could hear the words coming from Luke’s teacher’s mouth. I even half-expected to hear them, and much sooner than second grade. I have always known Luke was a little different from my other two kids. He just takes longer to do everything. He didn’t walk until he was sixteen months old. He didn’t have much to say until he was past two years old, but then he wouldn’t stop–at least at home. He is so sensitive. He panics when there is too much commotion in a room. So I have always worried more for Luke and been more protective of him.  But after my parent-teacher conferences this past November, I became scared for him.

I cried as soon as I closed my car door after leaving the school. I called Scott who was still at work and yelled at him irrationally for not being there with me. I felt frustrated by my ignorance, for not knowing what was wrong with our son and for not doing something about it sooner. His teacher hadn’t said exactly what she thought, but the implication was loud and clear; something was wrong with him, or at least that’s how I understood it. Scott calmed me down. “We will get him whatever he needs. It’s going to be okay.”

The most overwhelming part of it was knowing where to start finding help. Since all the doctors’ offices were closed at that hour, I began by googling his “symptoms.” “Poor confidence, overly shy,  sensitive to too much stimulation, low standardized test scores.” Everything pointed to Autism Spectrum Disorder (ASD). I know children who are on the spectrum and I could honestly say that some  of the things Luke did made me wonder. Still, I couldn’t be positive of anything. I didn’t think that I, armed with Google’s search browser, was any kind of expert on these things.

Next, I called a very good friend who had opened up to me just before conferences about how she had been taking her daughter to a child psychologist. She told me we needed to start with our pediatrician to get a referral to go to a psychologist.  Okay, so I would need to wait until the morning. I barely slept that night. And let me be clear, if you find out that you need to have your child tested for anything, the theme of your life will become “Hurry Up and Wait.” And while you wait, you will agonize over everything you’ve ever done to yourself or your child since his or her conception. You will fill your spare minutes wondering about insane things. “Maybe it was something I ate during my pregnancy–the doctor warned me about nitrates, but I had to eat that turkey sandwich, didn’t I?” “Maybe I just had the boys too close; I couldn’t give Luke all the attention he needed.” It’s funny because my answer was staring me in the face just by wondering all of these crazy things. I just didn’t understand it yet. But I’ll get to that later.

At our appointment with Luke’s pediatrician, the doctor spent about twenty minutes asking questions about his temperament, the feedback from his teacher that prompted our visit, our family life at home, etc. We left the office with a stack of business cards for child psychologists, and I, with more questions than when we had walked in the door.

All the psychologists recommended were well-accredited. I began calling each of them to see when we could get Luke in for testing and each one told us the test would take around eight hours. Some of the psychologists split the test into four two-hour increments each on a different day. Others liked to do the test over the course of a single day with mini breaks between sections. None of them could see us for at least another month. More waiting.

We chose one based on reviews from two other parents we knew who took their children to her. She also happened to be the one who would be able to start the test the soonest which was still after the first of the year.  I tried to stay upbeat. I got through Christmas keeping busy. I hung stockings by the fireplace and our ornaments on the tree. I baked dozens of cookies. I had my Christmas cards out the first week of December. I was doing everything I could to help the time pass quickly until that first appointment. I promised myself I wouldn’t search the internet anymore. Sometimes it was just scary what came up. Luke’s gloomy attitude toward school continued in spite of many of his classmates inviting him over for play dates or us inviting them to our house. I didn’t think his social life was suffering. He just seemed worked up on Sunday nights before bedtime, dreading the next morning and usually slunk into the car each day after school like he hated the past eight hours of his life.

Finally, the day came. We drove down the cold, gray road and he was very still in the back seat with wide eyes. “You all right, buddy?” I asked as cheerfully as I could. He met my eyes in the mirror and didn’t say anything, just nodded unconvincingly. We arrived at the office. She was with another child. We made ourselves at home on the sofas buried in emoji pillows and the tables covered with puzzles and toys. When the door opened, we met Luke’s doctor. She was warm and welcoming, empathetic, and a little quirky. Luke connected with her immediately which was good because I had to be out of the room for the testing. I was worried that Luke would flip, so I stayed for a while.

Every Saturday for four weeks we did Luke’s testing. He didn’t mind at all. He said the tests were like puzzles. Sometimes they were really tough, but the therapist reminded him that they are supposed to be. She had gained his trust quickly which is hard to do with Luke. The results took another six weeks from the date of his last test. That wait was nerve-wracking, but it was a very comprehensive test with loads of information to process. Finally at the end of March, I sat down with Luke’s doctor and she handed me a stack of papers, forty-two pages, to be exact, detailing Luke’s test results.

“Let me cut to the chase,” she said. “Luke is not on the spectrum. He has moderate General Anxiety Disorder (GAD). I felt my body sag with a mixture of relief and understanding. Before I had sworn off online research, I had been reading about anxiety disorders and Luke’s behavior seemed to match many of the stories I had read. I was also prepared for the other news, that he might be on the Austism Spectrum, but in my heart, I didn’t believe that was the issue. Still, I reminded myself constantly, they’re all just labels and every person is so unique. We would meet whatever challenges we needed to, head-on, one step at a time.

Dr. Linda explained that there were all sorts of coping strategies we would work on with Luke that could be used in any situation, whether his anxiety spiked at home, in public, or at school. He also qualified for a 504, which is basically an accommodation plan that is established between us and the school administration to help him get through his school days as needed. She noticed a few of his triggers when his anxiety kicked in full force were when he was being asked to do many things at once like having to remember multiple step directions, when he’s being rushed, and when there are a lot of distractions preventing him from focusing. He also has many worries that hold him back from trying new things. He’s never been a risk-taking kid. He’s not the kid raising his hand to volunteer in class or assist the magician in a magic show. Luke is our silent observer. Everything Dr. Linda was telling me made perfect sense.

Our plan of attack against Luke’s anxiety is a multi-dimensional one. We meet with his therapist every other week for one hour and she gives new “tools” to deal with his worries. We also met with the school counselor and principal to come up with his accommodation plan, allowing him to utilize the resources available at the school. But the very first thing we had to do was help Luke understand where his anxiety comes from. And THIS is the main reason I decided to share this really personal information with all of you.

We were sitting in Dr. Linda’s office. She handed me a clipboard with a blank sheet of paper and a pencil. Luke was having a tough time with his session that day. His eyes kept welling up and he didn’t want to answer any questions. Dr. Linda kept reminding him that all of his feelings are normal. Even the “cold, prickly” ones. She changed directions on him after this.

“Luke, where do you get those cute dimples?” Luke tried not to smile but didn’t answer.

“From his dad,” I said.

“And Mom, where does Luke get his big, hazel eyes?” Dr. Linda went on. Luke piped up, “From my mom,” he said softly.

“Luke, if you got those things from your mom and dad, don’t you think your worries might come from somewhere else in your family. Where do you think your anxiety comes from?” She kind of pointed the question at me now. “Mom, can you take that paper and pencil and write a list of all of the people in your family who deal with anxiety?

Within moments, I wrote at least a half a dozen names on the list, myself included, of all of the people in our family who battle anxiety. I handed her the paper. Her next words shifted the world on its axis for me.

“You see, Luke, it’s not your fault. Mom, it’s not your fault. It’s not anyone’s ‘fault’ that you deal with anxiety. It is the way God made your brain. He gave you all a heaping dose of anxiety. All of our brains are made differently. The reason we are here is to understand that our worries, our fears are just feelings–just like happiness, anger, even hunger! But you feel the worry thoughts more strongly. It’s just the way God made you. We are going to learn a whole bunch of tools to help us get through those feelings when they happen…Luke, do you understand what I’m saying?”

He sat up straighter on the couch and I could hear his little voice quivering. “I didn’t know it wasn’t my fault,” he said. My eyes filled with tears. I tried to blink them back. Dr. Linda smiled at both of us.

“It’s not anyone’s fault,” she said to both of us.

We are now about three months into Luke’s (and consequently MY) therapy. Since we’ve begun, Luke has done things I never imagined him doing before. He volunteered to be a helper during a presentation at a field trip at the end of the school year. He has jumped off the back of a boat and a dock into a lake without any coaxing. We went to the zoo one day on one of the busiest days of the year and he didn’t cling to my side for one second. I don’t know if everyone experiences these kinds of changes just over a few months of therapy, but I will testify to how powerful the whole experience has been for him and our family.

I decided to open up about this because maybe you or your child are going through similar things. Maybe it’s not anxiety, but anger, depression or any other of the “cold, prickly” emotions that we hate facing. There is such a stigma in our world about mental health. But if I ever had any doubts, I am now a firm believer in the power of working through your issues with a professional mental health provider. Chances are that your kids are on summer break. This is a great time to schedule an appointment and get in before the new school year starts.

It is a bit of a journey into the unknown, and coming from someone who is severely uncomfortable with the unknown, I understand your worry, but it’s so worth it. I know for some people it’s an issue of expense. If your insurance doesn’t cover much or any of the expense involved, there are less expensive or even free resources for these services. Talk to your pediatrician or family doctor for a push in the right direction for your situation.

It isn’t always convenient to do these things, but I try to look at the bigger picture. We are prioritizing Luke’s mental health now while he’s young so that as he grows into a young man, he will hopefully have a better handle on his emotions and won’t be seeking out self-destructive ways of coping with them later. I would encourage you to do the same for your child. It’s not your fault, but you can do things to make life’s tough stuff easier to deal with.

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Here is Luke at the water park. He used to hang right by my side the whole time, but here he was splashing and playing and having fun with his brother, sister and cousins.
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2 thoughts on “It’s Not Your Fault.

  1. I have seen significant changes. I’m so happy you’re helping him at a young age. Thanks for having the courage to write about this. ❤️ Lulu

  2. Hey Steeny, this was a very powerful piece about the reality that all of us need to take a look at our preconceived notions that if we simply leave the problem alone, it will correct itself. This should be read by all parents who have similar matters going on in their lives so that they can get the needed help or assistance and not be afraid to it!

    I Love You!

    Dad

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