Eleven years ago, when my son Link was in kindergarten, he was in a class so large it required a teacher’s aide. His name was Mr. A. For us Mr. A was a godsend, because he had a special place in his heart for my son who was mostly non-verbal and often lost in his own imagination. Years later we’d diagnose the inattentive type ADHD and Auditory Processing Disorders that made Link so different from his classmates. At the time I was just glad to know that there was someone at school who thought Link was wonderful, who took time to tell me little stories about things that Link did. His teacher was worried about Link, but Mr. A saw Link as amazing and interesting. We were glad when Mr. A became the PE teacher and then was Link’s fifth grade teacher. Fifth grade was a good year. Not all of the elementary years were good.
There were a string of teachers in elementary school. One for each school year. They variously saw my child as stubborn, lazy, genius-level smart, frustrating, and a dozen other things. Sometimes I liked seeing what they saw. Other times I wished they could see what I saw. As the baby-cuteness vanished and teen gawkiness arrived, Link turned more inward. He was less willing to be vulnerable in public. This is true of most teens, but in Link’s case it meant that the vast majority of adults in his life saw him as an enigma. Often they liked him, mostly he fit in and learned exactly like all the other kids, but then he would hit some road block that was huge to him and invisible to everyone else. Then he would shut down, draw inward. The teachers didn’t know how to reach in and he didn’t feel safe enough to reach out. “How can I help Link?” they would ask. I didn’t have good answers to give, because he was a different person for them than for me. He was different at school than he was at home. I made a bridge of myself to make sure that he had a way across the educational gaps.
In junior high we had Mr. H. He was the resource teacher who held Link’s IEP file. He watched out for Link and liked him. Link liked Mr. H too. Sometimes Mr. H got to glimpse who Link was when he felt relaxed and happy. Mr. H wanted very much to help Link, so sometimes he helped too much. He took away opportunities to struggle and learn. We were grateful, because there was far too much struggling, but I also knew that Mr. H saw Link as a person who struggled and needed help.
High school hit hard. Link struggled. There was no Mr. H to see the struggles building and to whisk some of them away before things got too much. There was no Mr. A to remind Link that he’s amazing. I searched for an on-campus mentor, someone that Link could turn to when things felt hard. But all the people moved so fast, they were so busy with so many students. Taking any of their time felt like an imposition. Link felt it too.
Two weeks ago I sat across the desk from a woman at Vocational Rehabilitation. She told me that it is her job to take teens with disabilities and help transition them into independent adulthood. Two days ago Link and I sat in her office while she talked to him about his application. I watched this woman watching my son. She sees him as a bright prospect. She sees a person whose challenges exist, but are fairly easy to surmount. She sees a worthwhile person who has a lot to give to the world. She is prepared to mentor him as he becomes who he wants to be. I want to just hang out in her office and soak up the way she sees him and I want him to soak it up too.
Finding someone who sees Link this way is such a relief. I need to remember to tell other mothers the good things I see in their children.
A support group is an odd thing. It was hard to convince myself to look one up through the NAMI website. Then it was hard to convince myself to go. I drove myself to the state hospital which houses psychiatric in-patients, and wondered what on earth I was doing there. I was told “go down the hall and through the door.” But the hallway had about eight doors, so I had to go back to the front desk for better directions. A different woman walked me to the room, but it was the wrong support group. A lady from the wrong group walked me to the right one. All that meant I walked into a room of strangers already intimidated by the location and feeling lost and out of place. I wasn’t sure if I even belonged there. Would I face something intense because all the others were dealing with conditions more severe than what my loved ones had? I really didn’t know what to expect. In the end, the group was small. Just four of us and two were the ones whose job it was to be there.
The point was to talk. I wondered if that would be hard, but it turns out that when the listeners are interested and sympathetic, the stories flow freely. I tried to form a coherent narrative, but I don’t know if I did. My thoughts jumped from kid to kid and all along the timelines of our lives. At first we took turns, but then it became more conversational, thought leading to thought. Person talking to person. Telling the story of what is going on doesn’t change any of it, but somehow it does. There were parents there who’ve felt what I feel and they survived it. Not having to be alone with the struggle, having someone to listen and witness the difficulty, changes me.
A support group meeting is strange, awkward, intimidating, embarrassing, boring, validating, and helpful. As I sat there, the observer part of my brain was watching how the meeting was handled, the ways that the leaders helped people take turns, the careful validations of feelings and providing of information. That observer part of my brain is often so ready to claim that I don’t need things because it can see how the things work.
Yet, when I came home and walked in my house, I was glad to be there. It has been a long time since walking in my front door has been a glad experience. Of late it has always been a re-shouldering of burden. I came home from the support group and was glad for my house and my people. Such a tiny shift, almost imperceptible, but significant things can be tiny. If that is all the group ever gives me, gladness on returning home, I’ll take it. Sign me up for another meeting next month.
I was having a hard Sunday, one of many that I’ve had in the past few months. I sat on the bench at church with only half of my family. Patch had whispered to me that he didn’t feel well and lay his head down in my lap. He fell asleep curled up like the much younger child he used to be, but isn’t anymore. I sat with him, letting him sleep through that meeting and the next. I only woke him for the third hour, since the chapel gets used by priesthood during that time and I needed to be in relief society. I walked down the hall and a friend chanced to be next to me. Or maybe she walked next to me on purpose because I could tell she’d noticed I was having a hard day. We entered the relief society room, and I reached out to touch her and say “will you sit with me?”
On a different Sunday, one that was less hard, but still not easy, there was a lesson about taking the yoke of Christ upon us. We had the usual description of what a yoke is (a piece of wood shaped to allow two animals to share a load), etymology of the word yoke (from Proto Indo European meaning “to unite”), and reading of scriptures relating to yokes (Matt 11:20-9-30 “Take my yoke upon you and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light.) As I listened I turned over in my head my usual response to this passage of scripture, how I like that the word “light” can be read to mean the opposite of heavy, but also to mean the opposite of dark. One word, multiple interpretations. The lesson did not really go that direction, instead of discussing how we yoke ourselves to Christ and pull with him, we talked about how we as members were yoked together to carry all the things. The point being if we redistribute the load, the work becomes easier.
I’ve been thinking about that yoke lesson a lot. Particularly at moments like the one where I asked my friend to sit with me. Or when I’m walking into a pharmacy to pick up an embarrassing number of prescriptions and I meet a friend, whom I haven’t seen in years, and who is also picking up mental health related prescriptions. So then we sit and talk. We decide to get together for lunch and talk more. I think about it when I’m driving toward home and I see the mother of my child’s friend in her yard, so I stop to talk to her about our children and I realize here is yet another person who can understand my current load. Not only that, but she promises to send her kid to hang out with my kid so neither of them will spend so much time alone. In only a brief conversation, burdens are shifted, shared, made lighter.
It was less than two weeks ago when I felt terribly alone with my pile of troubles. I prayed in that hour and I was heard. Since then I have been shown that the people I need are already in my life. The support network was already in place before I was able to admit I needed one. All I had to do was open my eyes and be willing to share my struggles.
I’m pleased to announce that Cobble Stones 2011 has a new cover. I’m so very pleased with how it turned out. The cover designer I worked with was brilliant and she created something much better than the one I put together for myself. This cover does a much better job of conveying what the essays inside are about: growth and overcoming difficult things. The essays inside are the same as they’ve always been. For the first 100 copies, this cover will be a dust jacket over the old cover. After that I’ll print up new books with this cover on them.
I talked to another parent with a son who is my son’s age. “He has a job now.” This other parent said. “It’s a restaurant job and he doesn’t like it much, but its being good for him.” The parent went on to describe how this boy is part way through learning how to drive and how he complains about the homework from his three AP classes. I sat there and listened to this father describe a parenting experience that was completely foreign to me. He wasn’t bragging, he was just telling me about stuff that felt completely normal to him. It was a description which matches the high school experience as witnessed in movies and on TV shows. And I vaguely remember going through something like it. I thought of my son, who spends so much time isolated. I thought of the therapy sessions, vocational rehab, and homeschooling that make up our existence. I thought about how none of it seems like enough and how I can’t currently picture my son going to college. It was like this other parent was telling me about a work of fiction, the fairytale of high school.
I sat in the elementary school office waiting for a meeting. As I waited for the teacher and the principal to be ready, I tried not to think about sitting in this same chair two years prior to discuss a different child in crisis. Two years is a long time, and you’d think that I’d have had time to process and let go of all the emotions. I haven’t had the time. I’ve been pushing thoughts out of my way so that I could take care of other thoughts. Mostly I don’t notice, until I hit a moment which would be déjà vu, except that I know exactly when and where I’ve experienced the moment before. It is so very familiar, same teacher, same room, same month of my child’s sixth grade year. But things are different too. Different child, different principal. This time there were only three of us in the room instead of five. This time we didn’t have to address behavioral or safety concerns. This time I didn’t show up with a plan for how to fix things. I’m too tired to make plans anymore. All I can do is say “this is where we are.” And to let them know that sometimes the homework won’t get done, not because I don’t think it is important, but because sometimes he can’t and sometimes I can’t. And I tell them enough about the things going on (beyond the those which relate to the child under their care) that they believe me when I say that sometimes the best I can give them won’t look like much.
My daughter was unsaddling the horse she’d been riding, so I wandered into the indoor arena. The big space was empty and the dirt was soft under my feet. I looked down at the shoe prints and hoof prints in the dirt and thought about how we all make marks upon the world simply by passing through. I looked back at my own prints, noticing the tread pattern of my shoes. I like going to the barn with my daughter. The priorities there are so different from anywhere else in my life. People tend not to be in any particular hurry. They chat, they pause to watch other people ride. The barn cats are friendly, glad to be picked up and snuggled. It is a space where my time is free of any other assignment than to bring my daughter, wait, then take her home again. Sometimes I bring work with me. Other times I just drift; watching my daughter manage a horse, listening to barn conversations. It is a much more pleasant form of therapy than the kind where we sit in and office and talk about hard things. Instead my daughter sits on top of an animal who outmasses her ten times over and learns that if she wants to control the horse, she has to first control herself. Telling people that my daughter has horseback riding lessons feels self-indulgent. Priviledged. But it is cheaper than office therapy by half. I walked back along my footprints feeling the quiet of the big empty space.
The words typed themselves on the screen in front of me. Or at least that is how it appeared. The truth was that my college daughter was typing words into a shared document. I was there to help her make sure the words said what she wanted them to say. It was a difficult message trying to give someone hope while also saying “I can’t be your security blanket. Please leave me alone.” It was the third or fourth time this year that I’ve helped my daughter sort out what words she needed for a difficult conversation. She’s had a semester of difficult conversations and growth.
The sun was bright in the front yard as Howard held up a brochure and squinted at the colors of our house. The page of the brochure showed shingles and we examined them to pick what would be on our roof for the next twenty years. The contractor stood in the yard with us. He’d made us a good offer, still expensive, but less than I’d been afraid we would have to pay. I’m just grateful we can pay. Even the contractor told us that the current state of our roof is a bit scary. All the gravel is loose, making the walking slippery. We couldn’t afford it last year or several years before that. I’m looking forward to being able to drive up to my house and not have to think “We really need to replace the roof before something breaks.”
After ten minutes of idling, I turned the engine off. My son looked up at this change in the status quo. We’d been sitting, mostly in silence. I’d run out of useful words. Instead I was waiting to see if he could decide to get out of the car and go to class. I could tell that part of him wanted to. When I asked, he said he liked his teacher, his classmates. He liked learning. Yet going was hard. It had been getting harder for a while. His teacher was worried. After twenty minutes I walked him into the building. He walked slow, his feet literally dragging with every step. In the hall we encountered his teacher from last year. She just happened to be there, and she happened to have time to stand and talk to us. She named what I knew, but hadn’t consciously recognized. I hadn’t wanted to recognize it because I really wanted one of my at-home kids to be fine. My son was depressed, chemically incapable of enjoying things that he would normally love. I mentioned that he’s already on medicine. She looked at my son, who was sitting, head down, arms curled around his knees, then she looked at me and said “If he’s on medicine, it isn’t working.” And I knew she was right. It was time for doctor’s appointments and teacher appointments. I am so weary of appointments.
“Take all the time you need.” He said to me in a quiet voice. We were sitting across a desk from each other in his office at the church building. I was there because I’d finally come to the conclusion that I should probably let the bishop of my congregation know about the mental health struggles impacting our family. I didn’t come with plans, just to tell him where we are and what feels hard. I tried to believe that I could take whatever time I needed, but I could feel that time pressing on me. LDS bishops are not paid for their ecclesiastical time. This man put in a full day of work and then put on a suit to put in hours during the evening. His job was huge. Bishops are always over burdened. I knew that on the other side of the office door sat someone who was waiting for the next appointment. And waiting. And waiting. Despite not wanting to take up too much time, I was so full of stories that I talked for ninety minutes. He listened to all of it.
At one point I apologized for not coming to him sooner. Because I knew that I should. I knew I needed help that my ward family could easily supply if they knew I needed it. But I didn’t want to be a burden. That seems like the good and kind thing to do, carry my own stuff so that no one else has to deal with it. Except that is the opposite of the purpose of having church in the first place. We’re not here to avoid burdening each other, we’re here to share one another’s burdens. With the weight of all the things spread across all the shoulders, it can be lifted. That can’t happen if we all hold our troubles tight and refuse to share them.
My fingers are on the keys and I want to spin out words through them, but the white space on the screen in front of me is empty. I try to find a place to start, a story I can tell. Except it seems like each story is tangled up with two or three things which are not mine to tell. My life and mind are filled with confidences that I must keep. Some of them will be less sharp in the future, less able to hurt. They can be told then. Others… will take much longer to lose their edge. I tell the stories I can, in the places that I can. The rest I hold for now.
I love spring flowers. They are hope after dark and cold. They show up for a time and then disappear again until after the next cold dark season. There have been years when I was so busy I completely missed paying attention to the season of spring flowers. I was sad when I realized I’d missed the daffodils. This year is no less busy, but I’m taking time to notice the flowers each time I walk up the front steps of my house. It is a small mindfulness in the midst of all the other things, and it helps.
There is this pattern everyone expects. Babies, toddlers, and preschoolers all require near-constant supervision. It is a very time-intensive and hands on portion of the parenting experience. Then they go to school and the middle of the day hours open up. Parents have space and rest that they’ve sacrificed for five years (or seven, or ten, depending on how many kids you have and how they’re spaced.) Of course the reality is that the “free” time is almost always immediately filled with something else. In my case, work flowed right in and used up all the available time. Going back to work is often something a primary care parent does once the kids are in school. Other parents become more active at the school, which is where PTA committees come from. I’m quite grateful to the parents who volunteer in this way. They make the world better for all the kids. I thought I’d be one of them, that hasn’t happened.
What I did not expect was that in the past year my teenagers have required a lot of parenting during work hours. This has been particularly true since January when we’ve gone to a ¾ homeschooling scheduled for Link. I no longer get to turn off my parenting brain for five hours and let it rest until the kids get home. Link gets home about twenty minutes after Patch leaves for school. Lately getting the kids out the door requires focused attention from 6:30am until 8:45am. Then Link gets home. Some days, the good ones, he just goes to work and I work and Howard works. Other days I feel like I spend all day being aware that Link is not working, or arguing with him, trying to convince him that he really can get some work done. Or giving up on my work and sitting down with him for an hour to figure out why he’s blocked over an assignment that looks very simple on the surface of it.
I really miss having a solid block of working hours. I don’t need six in a row, I’d just love to have well defined territories for the parts of my life. As it is I’m not getting enough sleep because the only time when my parenting brain turns off is after I’ve coaxed all the teenagers into going to bed. I’m back to being sleep deprived and hands-on with parenting. It is not what I expected at this stage.
I cried when I got back to the car. I almost didn’t make it there before the crying overtook me. For the first time in I don’t know how long, I’d talked to someone who actually has the resources to help my son. It was the first time I met someone who had a road map that could take us from where we are to a future where my son is in control of his own life. Some of the tears were relief. Some were just because hope hurts. It hurts because of how often I’ve had my hopes crumble apart. Crumbled hopes are a natural side effect of trial and error. They become sharp and painful when time feels important and the stakes are emotionally high. I’m steal healing from my prior encounters with hope shards.
The meeting was with Vocational Rehabilitation. It turns out that there is an entire governmental department whose mandate is to help people reach independent adulthood. It turns out that they can start helping at age 14, which would have been nice to know three years ago. We have a slow paperwork process ahead of us, but beyond it is vocational diagnosis, social skills classes, and job coaching. We’ll have a case worker who is focused on helping my son pick a type of job, get the education for it, and apply. This is the guidance that I prayed for last September. Or I hope it is. I’m ready to walk out across the shiny hope, trusting that it won’t turn to shards beneath my feet.
It never occurred to me that vocational rehab could apply to my family. What we deal with is subtle, only noticeable when the troubles accumulate. But the counselor says that auditory processing disorder and ADHD are valid reasons to apply. So we have an application and an intake appointment. I expect the process to be slow and paperwork heavy, but I’m happy to put up with that if it gives my son a map and a guide for becoming an adult.
In the brightest part of the afternoon, I told my kids to put on their walking shoes. We were headed for a park a mile away. One mile there, one mile back, with probable running around the park in the middle. It was the first walking event of the many that I expect to require this spring. We all need to be walking more, because in July our family will be going on a Pioneer Trek. We’ll spend four days dressed as Mormon pioneers, learning history, walking, and pulling a handcart full of our gear. I expect it to be a fascinating experience. At least it will be if we’re all in good enough physical shape that it isn’t miserable.
Pioneer stories are often told in my church. They feature large in our history as the early Mormons were often not welcomed in previously settled communities. They had to migrate en masse more than once until they went so far out west that they settled in Utah. Outfitting covered wagons and ox teams was very expensive. Over the twenty years that Mormons traveled across the plains to Utah, they found very efficient ways to get people and their belongings across. One of these methods were the handcart companies. These groups pulled two wheeled carts across a 1300 miles. They were devoted people who believed they were called of God to walk to a promised land. Three thousand people came to Utah pulling handcarts. The stories of these people are stories of courage, faith, endurance, sacrifice, tragedy, and pain. Those last items get an unfortunate amount of emphasis in the stories that are told at church. I often tune out when someone begins to tell a pioneer story because I know that the teller will attempt to yank on my heart strings.
We’ll be going on this Pioneer Trek with all the youth in our ward ages 12-18. The event is primarily for the youth, structured to teach them about church history and that they can survive hard things. Howard and I will be there as adult chaperones. We’ll be the Ma and Pa for a group of teenagers. Our kids will all be along for the experience, which is why we were asked to go. This is likely the only chance that clan Tayler will have to take a trip like this together. It will be something we won’t forget. It is already beginning to be. I had a reason to haul my kids out into the early spring air and make them walk to a park with me. Walking together led to talking with each other. It was all good. Next week we’ll walk to a different park.