As you remember, I was livid that the school had upped the ante on their test score attainment, had come up with the stupid idea for “Fun in the Sun” only for those who got a 75% on the post-test, and in the process had scared my son to the point that he was close to panic. I had taken a wait-and-see attitude … except that I did let the school know. I sent an email to the teacher with a link to the blogpage, with an explanation that while I think she’s an awesome teacher (which I DO), and I didn’t even know his score yet, he was close to a panic attack and that I thought that they needed to know one parent’s view for their planning for next year’s activities. She responded back with a very professional “thank you for your input” email. She and I are truly friendly and I felt heard.
And throughout, I just KNEW that Ray would do fine. That he is so smart and he had had so much practice on the practice tests; that his knowledge would win out.
On Friday, I got the email from the teacher. Ray got a 62% on the test and she was so, so, sorry. She emailed me the score rather than put it down in his calendar for everyone to see and that she hadn’t told him yet. I was pleased at how delicately she handled it. This teacher and I are friendly and I have utmost respect for her… but I cried upon reading her email. I sat at the computer and bawled at how much this awful disorder has affected my son- highjacked his knowledge, his coping, and his peace of mind. And now, it had taken his pride away from him.
And how was I to tell him? Tell him that he is so smart, that all of his hard work was in vain, that he had FAILED…?
As a professor, I teach my teachers never to set up a situation where a kid can fail publicly. If a kid goes up to the board to solve a problem, that child does not leave that board until they have succeeded. If they volunteer for an answer, you help them see where their thinking went off. Public failure is perhaps the hardest thing for a child and is a guaranteed way to shut them down. And here my son is facing public failure- at the age of 7. Not just a small mistake in class, easily fixable, but a whole day of failure. A whole day of public humiliation- at the age of 7.
I was depressed. My husband was depressed. My mother was depressed. We spent all day emailing back and forth on Friday- discussing how to handle it, what to do, how to approach this. We decided to let him have the weekend- to play, to have a friend over, to go to Savannah. To put it off as long as possible.
The first decision we made was the easiest- we will be keeping my son home this coming Friday and giving him alone time with my husband- always a valuable commodity when you’re a younger child. I am going to be out of town at a book signing and visiting family in San Antonio on Friday, so it would have to be hyped as “Daddy/Son time”. Not quite Fun in the Sun with friends, but at least something. It will be an unexcused absence, but I really don’t care, since I feel that the school boxed us in here.
We flirted with the idea of fighting it. Reminding the school that they cannot discriminate against kids based on disability- and that a kid with Tourettes and Anxiety Disorder has a disability that they are not accommodating, but abandoned this idea. He doesn’t have any legal protection because the disability hasn’t had any “impact” on him. Well, now it has. Oh goody… We will try to use this failure to build the case for a 504 since we now have “academic impact”. But that’s next year- not this week. Not this weekend. Not how to tell him.
Saturday, Ray ran all day long; went to the beach, played forts with his friends in the neighborhood, rode bikes and chased the dog. Lots of screaming, laughing, and activity. Not much Tourettes, although it is much more active than the last few months. But Sunday- erk.
Sunday morning, he started off resistant to the idea of driving to Savannah- an hour and a half away- to see the “Greening of the Fountain” that they do for St. Patrick’s Day. Savannah has the country’s second largest St. Patrick’s Day parade, and they get their Irish on for this week! We were going to have a picnic in the park at the fountain and play. We brought Emily, Elizabeth’s bestest friend who had spent the previous two nights with us. She’s my “bonus daughter” these days and spends LOTS of time at our house. “I wanna stay home… I don’t wanna go… Let me stay with Daddy… We can go next week…” I informed him, though gritted teeth, that he WAS going. Either the easy way, where he chose to get in the car, or the hard way, where I bundled him into the car, but either way- he. was. going.
On the ride up, he slept for 45 minutes. Ahhh- he was tired. Maybe THAT was the reason for the crabbiness. When we got there, we went immediately to Subway, where he ate a WHOLE footlong. Ahhh- and he was hungry. Maybe THAT was the reason for the crabiness. We’re always trying to find a pattern, a label, a REASON for Ray’s general crabbiness.
Had a great time in Savannah- walked the riverfront with its green fountains and tourists bedecked in green garb and plastic beads (t-shirt spotted- “Don’t drink the green beer. It’s Leprechaun pee”), wandered through a store called “The Paris Market” that had a lovely European flavor (they hated a bunch of children coming into their store who didn’t buy anything, but oh well- we had a great conversation about Paris style!), experienced a “honey tasting” at the Savannah Bee Shop, bought a tiny taster of “Tupelo Honey”, and wound up at Forsyth Fountain where cherubs spat green water.
At Forsyth Fountain, we took a picture of the children- Elizabeth and Emily posed, while Ray turned his back. Uh oh.. We asked Ray to take a picture of James and me, since he is unbelievably good at photography. “NO!” he shouted and turned away. “Emily, can you take the picture?” I asked. “I’ll take it!” he shouted. Nothing like competition to bring him around. “No,” I informed him. “You said ‘no’, so Emily will be taking our picture.”
And that was the trigger. He ran away, and although my husband chased him and tried to divert him with tickling him, he only grunted at us. We got to the car where he just stood at the door, and refused to open it. I informed him that he could wait outside the car until he was ready to get in it, or that I.would.put.him.in.the.car. He grunted and started to tantrum. I put him in the car, and he then had a full-on tantrum- a 45 minute tantrum- a very long car ride. He doesn’t tantrum often. It’s been about a year. But when he does- oy… Emily sat next to him, wide-eyed. “Sorry, Em. Ray doesn’t know how to express himself very well. We’re working on it”. More shrieks. A very long car ride home, where he gradually got control of himself.
Much as I hate tantrums, he’s fairly clear afterwards- able to talk and reason. It seems to clear his jangled system. Of course, my husband and I were pretty jangled at that point, and I saw how he and I both retreat when this happens- how our own coping strategy means that we pull back from the situation and from each other- it’s something we’ve had therapy about. The roller coaster of emotions is difficult to ride. I touched my husband on the leg- “Hey, can we remember the fun we just had?” He smiled wanly, and held my hand. And we rode for a while, holding hands, listening to the diminishing hiccuping sobs from the backseat.
After dinner, I saw how subdued Ray was, and how open he was to conversation, and I thought “Well, let’s get this over with…” James was in favor of leaving it until Monday, a day they have off for Teacher Inservice Day, but we talked about how we can tell him on Sunday, now that he was more clear, and have Monday be “Problem-Solving Day”. So… here we go.
“Honey… I wanted to tell you how incredibly smart we know you are, and how sad we are that you are dealing with Tourettes and anxiety. I hate that your brain doesn’t always work right. Mrs. Lane emailed me your test score- and honey, you didn’t pass. You got a 62”.
“I TOLD YOU TO KEEP ME HOME! THIS IS ALL YOUR FAULT! I TOLD YOU I WAS SICK! I TOLD YOU!!!” Full sobs.
And while he sobbed, I talked. I told him how I know that he knew it, that I was so sad that his anxiety took away his memory, that it is not his fault that his brain does this, and that we were going to work with him to learn how to deal with it. Soothing Mommy-talk where I don’t know what to say and I want the hurt to go away. Where I don’t want him to feel any more of a failure than he does. Where I’m trying not to let my own feelings get in the way of making him feel better.
“I’ll just MAKE myself do better,” he offered. “I’ll just try harder next time. Can I take the test again?”
“No, honey,” I said. And more talk about how anxiety is something in his brain, that it’s like having a cold or asthma, that he has to learn to deal with it, and that we can help him learn how to deal with it better. How we can take him to a doctor who can help him learn how to work around it. How Tourettes is something he has, not who is he. Too much talk, I know, but messages that he needs to hear over and over again.
“Can I dye my hair and wear fake tattoos and sneak into Fun in the Sun?” he asked. I’m impressed at his craftiness. He really has a capacity for sneakiness. Must take note of this- later.
“No,” I say, “But you don’t have to go. You don’t need more tutoring. You KNOW this stuff. If you didn’t know it, we’d be having an entirely different conversation. You need to know how to remember it when you’re scared. That’s what you need help with.”
Elizabeth, hearing all of this at the point, came in. “What’s up?” And we three talked all together- about how her eyes don’t work the same as other people and she needs glasses. About how when people’s ears don’t work the same as other people, they need hearing aids. About how when people’s legs don’t work the same, they need a wheelchair. About how her brain didn’t work the same as other people and we had to teach her to talk. How it is ok to find ways around parts of your body or brain that don’t work the same as other people. How you have to fight this thing.
It was so hard for me to not use words like “Don’t work right”, or “problem”. I found myself saying that every now and then, and would try to veer back into “the same as other people”. I don’t know what’s worse to a 7-year old “not working right” or difference. I cannot have him feeling defeated. There isn’t a lot of rehearsal for crisis.
I sent Ray to his room to wait for me, and I tucked Elizabeth into bed. Elizabeth, who got a 98 on her test. “I’m so proud of you, darling.” I explained. “I’m not going to talk a lot about it around Ray, but I am so proud of you. ” I don’t want her accomplishment to be swallowed up by her brother’s issues. And I am struck at how the child with autism is the “more typical” sibling and the one to shoulder the burdens of having a sibling with challenges. I had not expected this…
“Do you want Daddy to tuck you in?” I asked Ray. “No, just you,” he said. And I was saddened at how frail and raw he felt that he couldn’t disappoint his dad. Note to self- let James comfort, too. But for now, I’m following Ray’s lead and I snuggle into his bed with him as he prepares to read to me- a nightly ritual.
“It’s not fair,” he says quietly, as he looks at his bookshelf. “I read more than any other kid in my class (which he does- his reading is at a 5th grade level). I take more practice tests than anyone else.”
“I know, honey. You’re so right. It isn’t fair. That’s why we’re going to help you learn to work with it, so it doesn’t stop you.” Lots of snuggles, lots of kisses and he went right to sleep-exhausted.
At 2:00 in the morning, he came to my room. “I know what I’m going to do,” he told me. I took him back to his bed and crawled up next to him.
“What?” I asked.
“I’ll just try harder and I won’t gulp. I won’t twitch and that will help. I can fight it,” I can feel him locking his jaw to stop his gulping.
My poor darling. Anxiety and Tourettes are so difficult because there is a tiny bit of control that they do have. Keeping on top of it takes all of their attention. It’s like trying to hold in a sneeze. You can do it, but you can’t do much of anything else while you’re trying. And my little man is so desperately trying to maintain his control, but he needs some help, just like some people need glasses. They can’t make their eyes better- they have to use the glasses to get them better. I’m so proud of him because he wants to “do good”- so desperately. Too desperately. I tell him all of this, but I’m not sure he believes me. And I’m afraid of what might happen if he quits trying. It takes an awful lot out of him to try this hard.
“How am I going to tell Dakota (his friend at school)?” he whispered to me.
“Tell him that you’ll see him at Fun in the Sun and when he asks where you were, tell him that you were sick,” I offer. I have no idea what the “right” answer is.
“But that’s a lie!” he says, shocked, and I am reminded that he is 7. That we have taught him to tell the truth. That a lie is hard to maintain.
“Tell him that you can’t go- that you have a doctor’s appointment. I’ll make an appointment for you, if you like, so that it’s not a lie.”
And he turns his back, snuggles into me, and sighs as he falls back asleep. I wish that it were so easy for me.
I don’t know the balance. I don’t know the right words. I don’t know how to make this better. And I’m so afraid of what can happen if he gives up. I have lost both my brother and my daddy because they gave up fighting. And I have promised Ray that we will work on strategies and solutions tomorrow…