parenting

The Center Can Not Hold

By / May 26, 2016

Twice now, when I’m in the midst of a hard day, I’ve described the things I carry to someone else. In both cases the response was “Wow, you really are the one holding your family together.” I hear the words and I want to protest, because while it is true, it also isn’t.

I do a lot for my kids and for Howard. This is particularly true on “bad brain days” which is what we’ve taken to calling a day where everything hurts even though it didn’t yesterday. We could also call them depressed days, or anxious days, or crying days, or OCD days, or any number of epithets with the word “day” appended to them. On the bad days I’m there. I stand nearby, helping to redirect, running interference, helping get through the day in the hope that the next day will be better. It usually is.

The thing is, if I was not there, they would survive these people of mine. They are stronger than they believe they are. It would be harder, deeper, darker, but that would only make them stronger and more determined. Sometimes I wonder if I do them a disservice by being there. Perhaps I am preventing them from developing skills and strength that they need. Perhaps I am wearing myself out by being in the middle when the truth is that we would all be better off if I would step out of that space.

Stepping out is hard when I am scared. I’m scared a lot. And I can’t always tell if the fears have merit or if they are my own anxieties lying to me.

Sometimes I feel like if I step away, it will all fall into disaster. Then we hit a day when I am the one with the bad brain. Then my family comes to my rescue. They all have, both individually and as a group. I’ve watched them help each other in the same way. We all rescue each other. We hold together because all of us are holding tight against the winds and waves. It would definitely make a mess if I were pulled out, but they would sort that mess and continue onward. I’m glad of this. Dependence on me is not the end goal here. Not for any of them.

I am not the center. I am a nexus in a net. We all are.

Unplanned Upgrades and OCD

By / May 15, 2016

I was standing in the kitchen when I became aware that someone was talking upstairs. At first I thought that my college daughter and my teenage daughter were having a conversation, but then the sound turned angry. Parental ears are very attuned to picking up when the children sound distressed or angry. I went upstairs to see what was going on and the words became clear
“What?! No! Why did you do that!”
My teenage daughter was yelling at her tablet computer in full tearful meltdown. She was barely coherent and ready to shout at me. Her hands were shaking. It took me three minutes to get her calm enough to tell me what was going on. It turns out that Microsoft tricked her into upgrading to Windows 10. It was not something she wanted to do. She just mis-clicked a single button and then was unable to cancel the upgrade. The only option she was offered was to reschedule. Not knowing what else to do, she let the upgrade proceed.

My daughter has OCD. She has a doctor who prescribes medicine and a therapist who helps her with cognitive techniques to manage her issues. Among her coping strategies, she uses her tablet as a tool for emotional regulation. It contains music designed to be soothing and to help her with meditation. She uses the device for distraction when the intensity of her anxiety gets too high. Any time other people touch her device she gets stressed because she depends on it daily and the thought of not having it sends her into a panic attack. She has those too, full-on curl-into-a-ball panic attacks.

The upgrade had changed the functionality of everything she wanted the machine to do. She was in a panic because she couldn’t find her music that she relies on, couldn’t find Internet Explorer or her favorites list, all her app buttons had been shuffled and re-organized. Instead of having everything categorized and on separate screens, everything was all on the main desktop, which felt terribly unorganized to her. She was terrified that her coping tool was permanently broken. She was furious that Microsoft would do this to her without giving her a way to opt out. The thing that was supposed to assist her with anxiety was causing massive anxiety.

I sat next to her and tried to talk with her, but she was unable to be rational. This is one of the core manifestations of my daughter’s OCD. When the obsessions and compulsions are triggered, her brain is less able to be logical about anything. This upgrade was an invasion of her ability to control her environment, the worst thing I could do would be to take the device away, fix it, and give it back. She had to be angry and figure it out for herself. All that Howard (he heard and came too) and I could do was sit nearby and give suggestions for how to reconfigure. Our suggestions were met with an angry shout of “I know that!” or “I’ve already tried that!” Half the time she would then follow our suggestions and bring her device closer to functioning the way that she is familiar with.

Ninety minutes of active distress got the device into a configuration where she felt it was usable. By that time she and I had missed the first part of church. She was not in a state suitable for public, so we turned on a show that she loves and let her be distracted for awhile. Then she lay down and slept for two hours, completely worn out from the emotional upheaval.

I was worn out too. This is the third time this week that her OCD has been triggered in a way that took multiple hours to help her get herself right side up again. It breaks my heart a bit to see how hard she works for emotional equilibrium that other kids just have without effort. She is amazing and strong every single day. She has to be. I know that life isn’t fair, but this week I saw the unfairness more clearly than usual. It made me sad and tired. Here’s hoping that the coming week is less eventful than the week just passed.

Mother’s Day Wishes

By / May 8, 2016 / 2 Comments

These are my Mother’s Day wishes for everyone out there in the world who needs them.

May you have less guilt today than usual. Less guilt about the job you feel you ought to be doing. Less guilt about feeling like you should have done more for the mother in your life (or the one who is no longer in your life). Less guilt about the planning you intended to do, but didn’t because other priorities took your attention. Less guilt about how you should do a better job teaching your children to honor their mother. Less of the accompanying guilt that you are selfish because you are the beneficiary of the reminders you give to your kids that they ought to be nice to their mother. That’s a recursive guilt, I hope you don’t have it in your life today or any other day.

May you have less stress. Particularly less stress that is associated with taking care of others. Even more particularly, may you not feel under pressure to have a wonderful day because if you don’t then everyone around you will feel like they failed and then you’ll all spiral into the recursive guilt which is unpleasant for everyone. I hope you can dismiss this stress, and any other pressure to present yourself as other than you are.

May you have fewer strings that tangle your choices. Most particularly strings that are attached to gifts. May all your gifts be stringless. May you be able to move through your obligations today without encountering any tangles. May you have a day where the needs of one person do not conflict with the needs of another, and where you are not called upon to be the arbiter of who is unhappy.

May you have a quiet moment of beauty. It can be a moment you created deliberately, or one you wander into. It may be as long as a soak in a hot tub, or as short as noticing a flower outside your window. I just hope you have a lovely thing in your day.

I hope all of these things for anyone who needs them, mothers, non-mothers, children, parents, grandparents, care-takers, and care receivers. And one last wish: May you extricate today from the weight of expectation and make it into the day you need it to be.

Late Night Thoughts on Parenting

By / April 18, 2016 / 2 Comments

It is late and instead of being asleep I am noodling around on the internet. I’m looking at articles talking about how helicopter parents need to back off, and lists of ways in which incoming freshman are not ready for college because their parents hovered too much. Then I think about parents who get prosecuted for letting their kids walk to the park, and about how my kid’s schools contact me every time one of my kids has an F. Or if my kids are marked absent for any of their classes. Or if my kid misses a flex session where they are supposed to make up work. The messages urge me to talk to my child about their choices. The unspoken message is clear: It is the parent’s job to make sure that their kids succeed. So parents get caught in this system that pushes them to hover, and then complains later because they hovered.

I’m thinking about all of this because, with one of my kids, we’re out in the weeds. There may be a path here, but it is hard to see and maybe it will only exist after we’ve trampled our way through to create it. I’m doing my best to step back, let him struggle, let him fail, let him learn. On the other hand I’m also doing what I can to make sure the path isn’t impossible, to help him keep moving, to make sure that the obstacles are surmountable with his current allotment of resources. At times it feels like the worst of both worlds. I have to explain to others why I’m letting him take a potentially failure laden path, and I’m having to explain why I step in and intervene in ways that look like I’m the one keeping him mired in childish dependence. I’m wending the best parenting path I can figure out, and I’m usually convinced that I’m getting it all wrong.

That “convinced I’m getting it all wrong” is a normal parenting experience. This is one of the reasons that society gets so focused on touchstones and check points. Semester grade reports and end-of-year testing are used as a way to know if the kid’s education is on track. High School graduation is a huge measure of success. Other touchstones are getting a job, getting a driver’s license, earning an award, college admission, picking a major, getting married, getting a job. Any success that the child has can qualify. When kids hit the checkpoints it is a small reassurance that maybe the parents aren’t completely failing. I read this behind many facebook statuses “Johnny won the spelling bee! (maybe I’m not completely failing at this parenting gig.)” Parents aren’t the only ones watching, grandparents, aunts, uncles, family friends, neighbors, they all take note and help to celebrate. Milestones let everyone relax because the kid appears to be on track.

“Appears,” note that word carefully, because sometimes the internal experience of the child does not match the external success. Sometimes a checkpoint reached is more a measure of parental management than child growth. This is why helicopter parenting is scolded, because child growth should be the goal, not the checkpoints. Eventually the missing growth is exposed when the child is not prepared. Conversely, sometimes a checkpoint missed can also indicate growth rather than failure. Sometimes the strongest thing an almost-adult can do is to head out into the weeds because the standard path isn’t working. But a missed checkpoint looks like a failure. It makes everyone anxious and uncomfortable, because there is no reassurance that all will be well. then there is enormous pressure to get the kid “back on track.” People like the comfortable answers, the solid and stable answers. They like to know which college and what major. They want the major to be one that they can picture leading to steady employment. They try to steer artists away from art majors. They try to push college as the sure path.

There is no sure path. All of the paths are made of struggle, failure, getting up again, and moving on. Parents may manage their kids into college, but then the new adults have to do the growing they missed out on before. Sometimes people are exactly on track for a very long time, until life takes an unexpected left turn. Then they have to figure out how to find a new path for themselves. All of us will, eventually, have to venture out when the way ahead is not clear.

So perhaps I should use this as reassurance, that in “allowing” my kid’s education to veer away from standard, I’m letting him grow in a way that most people don’t until much later, even while he is not growing in some of the ways that his peers are growing right now. Maybe I’m succeeding and failing all at once. And maybe that is just fine.

What are we teaching the children?

By / March 20, 2016 / 3 Comments

A large part of a parent’s job is to teach the children. Humans don’t arrive on this planet socialized, they have to learn it from others. Many studies and articles reiterate the idea that parents are the largest influences on how their children turn out. The pressure of that is huge. I feel it every time I have to make a decision involving my kids. The trouble is that any action I take could teach multiple different lessons. If I buy them a treat after they’ve been pleasant at a store, am I teaching them good behavior is rewarded, or am I teaching them Mom can be manipulated? When we choose to stay home from a church event because going is too stressful, am I teaching them to opt out when things are difficult or am I teaching them valuable mental health coping skills? Even when I am very clear in my own head about what I want them to learn, they don’t always receive the message the way that I intended. In more than one high-emotion interaction I’ve looked at my child’s face and worried about what story they are telling themselves about the events we experienced.

There is a space between intention and reception. What happens in that space is influenced not just by the words and actions of this moment, it is also colored by my past relationship and history of interactions with my child. It is affected by the thing their friend said yesterday and the amount of sleep they got and that video they saw on the internet two weeks ago. That space can be terrifying to a parent who wants to do well, but isn’t a hundred percent sure of the path they should take. To increase the worry, there is also an awareness that as children grow, they will re-evaluate their childhood experiences and come to new conclusions about them. So even if the intended lesson is received in the moment, further along in time the child may decide that the lesson is wrong because they now see us differently or have a different framework for life than they had before.

One thing I’ve learned with writing is that I have very little control over the reception of my words. I try to be clear, but people respond in ways that I do not expect. Any attempt on my part to control their reaction only leads to hard words and hard feelings. I think this is also true of parenting. Ultimately I have so little control over the adults my children will become. I have influence, not control. It is not that the studies about parental influence are a lie. Parental influence is critical to child development. The lie is the one the parents tell themselves based on the studies. We tell ourselves that because we’re the biggest influencers in our children’s lives, it is crucially important to do parenting right. Then we run around frantically trying to figure out what “doing parenting right” means. This is where we end up judgemental of other parenting choices. Each of us spends so much time and energy developing our methods of parenting that when we encounter someone doing the opposite of what we chose, the fear creeps in. “What if I am wrong?” One way to squelch that fear is to double down and loudly proclaim how wrong the other parent is. Any time I’ve found myself judgmentally angry at another parent, some introspection shows me that my emotion is rooted in fear.

Parenting is actually a mutual language created between the caretakers and the child. The parents are changed by it as much as the children are. The relationship is influenced by their surroundings, their community, their support structures, or the lack thereof. I felt this as I raised my children through their youngest years. My responses to my children had to change as the children did. What worked to help one child was ineffective with another. Any time I figured things out, a kid would turn some developmental corner and I’d feel lost again. I was making it all up as I went. We are all making it up as we go. The process only gets harder if we believe that we have to make up elaborate lesson plans and instructional moments. If we try to control what gets learned. Instead of making sure we teach the right lessons, we should be the sort of people we hope our children will grow up to be. Who parents are matters far more than what parents do.

I’m not certain if that makes the parental pressure any easier, but it does shift it. It does mean that instead of being a dispenser of lessons and discipline, I can bring my children inside my indecision. I can say “I’m not certain how to answer that, here are all the thoughts rolling around in my head about it. Perhaps we can sort it out together.” Sometimes I do have to give a firm no, and sometimes I regret that response later. Other times I give in and regret that. It makes me feel like a wishy-washy failure, until I remember that having a perfect parent who does everything correctly all the time, means a child will never get to witness failure and recovery. They will never see how to be humble and apologize unless adults make mistakes where they can see, and then apologize for those mistakes.

We’re all muddling through together, parents, children, teachers, friends, young, and old. None of us has all the answers. We don’t need to. Instead we need to share the knowledge we have and be willing to admit when others know more that we do. I’ve learned some amazing things from my children, probably just as often as I’ve taught things to them.

On Reading Articles About Parenting

By / February 6, 2016 / 1 Comment

I read a lot of articles about parenting. This is a hazard of regular visits to Facebook and Twitter where the links abound. I’ve been reading articles about parenting for longer than I’ve been on social media. Way back before access to the internet was something most people had, I subscribed to some parenting magazines. At this point Ihave a long enough baseline that I can read an article and think “Ah yes the parenting trend has swung back to touting the need for discipline.” I’ve come to realized that there is one thing wrong with every parenting advice article I’ve ever read. It is the same thing that is wrong with advice in general. It is the assumption that one approach is correct for all circumstances. The truth is that parents are coming from wildly different backgrounds and cultural contexts. People have different inherent strengths and weaknesses. One parent needs to learn how to enjoy spontaneity, another would benefit from learning how to keep a schedule. This is why we get the wildly divergent parenting advice. All of it is potentially valuable, all of it is potentially damaging. It is up to individual parents to figure out what to apply in their own lives.

The trick of course is that parents are often insecure and defensive about their choices. I know I am and have been. When I read an article that tells me the critical importance of regular home cooked meals served with the family gathered together at the table, that pokes me in a guilty spot. Then I have to choose how to react. I could write an angry rebuttal so that other parents out there who are like me will know that their dinner style does not doom their children to disaster. I could humble myself and rearrange my life to make sure I’m doing the family dinner thing. I could deflect and say “That’s nice, but I do things differently.” Each of these responses may be correct. Which is why this parenting gig is so difficult. It’s all wibbly wobbly without clear guidelines.

A few weeks back there was a post that went viral. It was from the mother whose first baby was two weeks old. She said that she didn’t see why everyone claimed that parenting was so hard. She was handling it fine, still exercising, eating healthy, and keeping a clean house. Oh and her baby was simply a delight. Naturally there were floods of responses that ranged from angry to supportive to “Oh honey, just wait and see if you still say that later.” To me this young mother seems very naive. She assumes that all the weeks that follow will be the same as the two weeks she has been through. She also assumes that everyone else has the same situation as she does. Were that true, perhaps she would be right to tell others to stop complaining. In this case it is fairly clear to anyone who has been parenting for longer than two weeks (and many who’ve been parenting for less) that this young mother doesn’t know what she’s talking about. The thing is that I feel the same way about many parenting advice articles. They have the same naive assumption that all things are equal and the same process will work for all parents.

Of late many of the parenting articles I read are focused on special needs kids. I’ve dipped my toes into the deep waters of online autism communities and for parents of children with mental health issues. These special needs articles are still full of advice, but they seem to understand the ala carte principle. They are clear that parents should do what is best for their family and skip what isn’t. Still these articles make me sad, because I read about the benefits of particular therapies early in child development and those windows are closed to me. I have kids diagnosed in their teens and it pokes in a hurty place when I see things that would have been helpful if we’d had access to them earlier. Fewer and further between are articles that address the spaces we are in.

So why do I keep reading these articles if they are all naive or painful? Sometimes it is because I’m easily distracted and my brain is trying to avoid the pertinent work of the day. Yet I am drawn to parenting articles over a myriad of other things I could be doing. I read them because when they give advice that doesn’t fit my family, it makes me think through what does work for us and why it works. Articles introduce new ideas. Sometimes masked in the noise I find one thing that rings true to me. Then I collect that thing and it makes our lives easier, or the path ahead more clear, or it simply gives me strength to keep going through the hard stuff. Even when I feel that everything in an article is blatantly wrong or misguided, I can see past the advice to see the writer as another parent who is struggling to make sense of this parenting gig. I read because that is how I learn and get better at what I’m doing. There is not instruction manual for parenting except what we assemble for ourselves. It usually ends up being a hodge podge collection of things we’ve cut and pasted from our own lives and the experiences of others. We’re all making this up as we go, even those who want to label themselves as experts and dispense wisdom to everyone else.

Anxious Thoughts

By / December 28, 2015 / 2 Comments

One of my least favorite forms of anxiety is when there is an incident involving one of my kids and an adult from outside my house. The incident spawns a half dozen emotionally charged conversations which range between damage control and emotional processing. I then spend the next two days and nights with every spare cycle in my brain attempting to re-write it all. Could I have prevented it? I should have been more confrontational. I should have been more conciliatory. I should not have said that. Yes I should have, I should have said it stronger. Here is a thing I should have said, but didn’t. Here is a thing I think and feel, but didn’t say because it wasn’t constructive. Except maybe I should have said it. Here is another thing I should have made clear. Except I already tried to make it clear, didn’t I? Can I be blamed if the other party is incapable of hearing what my child and I are saying? I blame me anyway. Except I don’t because logic tells me that the incident occurred because the other adult overstepped bounds. Not our fault. But I should have handled it better.

And then there is the time that my brain spends trying to script out what I should say and do for imagined future conflicts. Because this isn’t over. More conversations will need to be had. And I dread them. Because I don’t expect them to go well. And I have to figure out how to stay focused on the important goals and not on venting feelings. My brain is really good at making up terrible scenarios where everything goes wrong from here and relationships crash and burn. It plays these scenarios out in the spaces between thoughts of conversational re-scripts. While I’m trying to be asleep.

The good news is that everyone inside my house is in accord about what happened. Conflict does not dwell inside my house. The other good news is that my child is more loving and Christ-like than I am in this. I may have to follow my child’s lead, which is right in line with scriptural instruction. More good news is that I have spoken to other adults in my child’s life and they are allies to my goals. I have not asked them to step into battle, but they will make sure that they take extra care to love and accept my child in the next few weeks. My child will need that.

Now if I can just get the noise in my brain to quiet down enough so that I can think clearly, that would be nice. I need clear thoughts to hear inspiration and guidance before I have any more conversations or take any actions.

Finding a Dream

By / December 10, 2015 / 1 Comment

He was supposed to be in school, not in the car with me driving for six hours to fetch his sister from college. He had a 3d graphics class we’d put him in because I hoped that it would spark an interest in him. I’ve done that a lot in the past few years, had him try out various classes, throwing spaghetti against the wall to see if an interest would stick. If one stuck, then we could seek out mentors. We could parlay interest into ambition and into an adult career or job. At eighteen, finding something my son wants enough to reach for adulthood was the most important task we could face. More important than graduating with his peers. Either the teacher wasn’t right, or the classroom environment wasn’t right, or it was just the wrong direction. Despite his innate capabilities with the software, my son disliked the class. I’ve learned from experience that we were better off letting it go and trying something else rather than trying to fix it. So when he asked to come with me on the trip, I said yes. I’m very glad that I did. Without the two of us pinned in a car, it might have been months before we had the conversation.

The conversation unfolded as soon as we were in the car. It was like all the things that had been pinging around in his head had finally come together into a cohesive whole. Like many of my conversations with him, it started in the middle and I asked questions to gather the missing pieces until I understood the full concept. This conversational mode is so obviously autistic in nature that I wonder why it took me eighteen years to see it. But then I don’t have the pattern recognition skills that my son has. (Him looking at reflective road markers: “I see the pattern now. The yellow ones mark the places where the emergency vehicles can turn.” This dropped into the middle of our conversation just like I’ve dropped the parenthetical into the middle of my story. I never even noticed that the reflectors had different colors, let alone deduced what they were for. This sort of thing grabs at his attention constantly.) My son laid out the pattern before me: A job he would love to have, the things he needs to make it happen, the goals necessary to get the things he needs. Suddenly, click, it is all there. As soon as he told me, I could see it too. Just like the road reflectors. Now he can move forward. He’s been stopped for more than a year, balking at adulthood until he knew how to proceed.

I’m not allowed to say yet what the plan is. It feels too important and fragile to him for it to be public knowledge. I can say that I think it is a good plan and he has a real shot at making it work. I will not be giving him the things he needs for it. I will be giving him encouragement and showing him how to acquire the skills to get the tools to get the things. Triumphs can’t be gifts and I really want him to experience a triumph that is truly his own.

It is possible that the will to move forward won’t stick. It is possible that he’ll give up. But even having this dream at all will help him across some of the road bumps that he wasn’t willing to tackle. For now, I’ll take the hope.

Special Needs Scavenger Hunt

By / November 18, 2015 / 2 Comments

I’ve spent the last eighteen years participating in an educational scavenger hunt and I’ve only just now recognized that was what I was dealing with. By age three it was obvious that Link was a special needs kid. It was also obvious that he was friendly, happy, loving, and smart. With the first diagnosis of language delay, I began seeking for things that would help him. I made up games, bought games, and worked with Link regularly. All along the way we had teachers, psychologists, and administrators who were very helpful to us. They gave me pieces I needed and helped us find our way forward. Yet we still spent a lot of time stumbling around because for all the help we did get, there was other help that we didn’t get because we didn’t know the right keywords to unlock those options.

A year ago depression loomed large in Link. He was desperately lonely and overwhelmed with trying to manage a full load at public high school. It seemed like we were constantly readjusting his schedule, dropping classes, switching to different ones. We were trying to find a balance, a way that he could do homework before he left the school grounds so that home time could be free of school stress. When I finally was able to identify depression as the problem, I called for a meeting with his school counsellor. It was like the word “depression” was a key that opened up a cupboard in her brain. “We could put him in home health.” She said. Then she described to me a mode of schooling which was something I’d been trying to describe for at least two years. It wasn’t that she didn’t want to help me before, but until I said “depression” she didn’t make the connection I needed.

I know a lot of parents shy away from seeking diagnosis for their special needs kids. I’ve done it myself. There are so many fears attached to diagnosis and the worry that the child will be labelled or pigeonholed. That has not been my experience. Instead I’ve found that a diagnosis is a passcode that opens up options. It is a lever which pries open pathways. I thought that because everyone was so willing to help, that I was getting all the help I needed. But that became less and less true the further along we got in Link’s education. At the high school level, staff is compartmentalized and specialized. There are lots of options, but it falls to the parents to seek out the options and ask for them. Parents have to be advocates. This requires lots of work, and it is exhausting.

I really recognized the scavenger hunt when Link was diagnosed as having autism one week before his eighteenth birthday. The diagnosing doctor handed me a folder with the phone number of a parent advocate and information sheets on three different transitional programs which might help Link. At that moment I thought how naming depression had led me to scheduling an appointment with a psychiatrist. The psychiatrist had given me information about autism advocacy groups and had suggested that getting a definitive diagnosis regarding autism was probably worth the time and expense. He also referred me to NAMI, who runs education and support for mental illness. I went to a support group for the families of those with mental health issues and they suggested that I sign Link up for Voc Rehab and the WIA youth program. So we did that. Multiple places encouraged me to finally plunk down money with a diagnostician and say “Is he autistic? I’ve seen autistic things since he was little, but I’ve also seen distinctly non-autistic things. I’m tired of not being sure.” The answer was that yes, he definitely is, and the diagnostician was frustrated that it hadn’t been identified when Link had been in kindergarten.

This is how it goes. One piece of information leads to another. There is no central source that knows all the options. Or if there is, I somehow always manage to arrive there last instead of first. By the time I was in touch with the parent advocate, I’d already heard of all the options she mentioned. We’ve still got more hunting to do. At this moment we’re waiting on funding from Voc Rehab. I’m waiting for a call back from the school district about their transitional program. I’m also waiting for a call from an adult educational specialist who can explain the GED process to us, because maybe that is the way to go. We’ve accepted the fact that Link will not be graduating with his class, even though his school counsellor would really like for that to happen. Sorting it all is a huge burden in time and emotional energy. It always has been. I constantly feel like I could be doing more and simultaneously I worry that I’m over helping.

Last night I went to a Relief Society dinner. This is the women’s organization of my church. I spent quite a lot of time visiting with a woman in my neighborhood who also has an autistic son. We’ve known each other for years, but me speaking about Link’s recent diagnosis opened up a huge well of shared experiences that we spent an hour talking through. She listened to me and was frustrated on my behalf that I spent so long without access to autism-specific resources that would have made the journey easier. As part of the decorations for the dinner there were anonymous notes on the wall where people wrote about the kind things that others have done for them. One of the notes said that I’d pushed to get her daughter into early intervention. I feel like I should know who wrote that, but I don’t. It could have been one of a hundred different conversations that I’ve had with people about special needs resources.

Last week I got a message on facebook from a friend who had read my post on Finding the Right Therapist. She asked me questions about therapy and children. I gave her what answers I had, but mostly those answers were in the form of additional questions she should ask and some direction for whom she should be asking. Thus I become a stopping point on someone else’s scavenger hunt to figure out how to help a child who is struggling.

I must admit that I spent some time this morning looking back at my past struggle and grieving that no one thought to give me answers that would have helped. I went ahead and let myself feel that grief. I know that I don’t want to spend a lot of time and emotional energy looking back with regret, but I have to feel it before it can pass and I am able move on from it. Moving forward is what is necessary because the scavenger hunt continues. I suspect it will always continue for Link in one way or another as he tries to navigate a neurotypical world while being who he is. Though hopefully we can reach a point where the hunt is not a major feature of daily life, and the hunt is primarily Link’s quest, not mine. He needs to be empowered to find his own solutions.

Some days I can believe that we’ll reach an independent adulthood for him. Other days I can’t. This too is part of the hunt. I’m not just seeking resources, help, and answers. I’m seeking emotional balance, peace, acceptance, and maybe even joy. This year is better than last year. We’ll continue onward to see what comes next.

New Diagnosis: Autism

By / September 17, 2015 / 6 Comments

Last week I mentioned that I got a new diagnosis for one of my kids. Link has autism. Link accepted this information with very little emotional reaction. Which is how he often reacts to new information. Then days or months later he’ll come and ask questions about the thing I’ve told him. So far he hasn’t bothered to ask me anything, which could mean he’s fine with it, or could mean the thoughts are still percolating. I’ve spent the last week or more sorting out my tangle of emotions about this. It is strange to suddenly discover, after eighteen years, that I am the parent of an autistic child.

Things I am feeling:

Guilt: This kid has had full behavioral psych profiles four different times in his life. At each one there were indicators for autism, but the professionals and I said “I don’t think it is.” We said that because when he’s relaxed and happy he’s able to meet eyes and empathize with others. He also doesn’t have some of the stereotypical behaviors like stimming or echolalia. The guilt is because I was satisfied with “we don’t think so” and never requested the extra step to check.

Peace: Because I know that at every single stage of Link’s life I have done everything in my power to help him. I made the best decisions I could based on the information I had at the time. I’ve worked hard for this kid and he has worked hard too. It is possible that an earlier diagnosis would have opened doors and treatment options for him. It is also possible that he is more advanced and socialized now because he was not shunted off into an autism educational track. There is no way for me to know and woulda coulda shoulda is not a useful game to play.

Hopeful: Because this diagnosis opens up access to some transitional programs that are designed to help people with Link’s particular set of challenges. We have a clearer path into independent adulthood than we did a month ago.

Worried: Because I don’t know how the autism label will affect Link’s self conception and I don’t know how the world will perceive and treat him because of it. So far the signs are hopeful. When I told Link he’s high functioning and that autism has a huge range of expression, it seemed to shift his self view. Suddenly instead of being at the low/disabled end of one spectrum, he’s at the high/most-capable end of a different one. I’ve seen the same out in the world. When I tried to describe his challenges before, I had to use a lot of words and often wasn’t able to convey what he needed. But the world is familiar with autism. When I say “he’s autistic” people nod and know how to adjust for him. And they say “He does really well. I can’t even tell.” So maybe my worries are unfounded, but they linger in my head and will for a while.

Tired: Because all the thinking and emotions are exhausting. Also we still have a long road ahead of us to help Link get to an independent adulthood.

Awkward: There is this huge community of autism parents out there and suddenly I have the diagnosis that says I belong. Except I don’t believe that my experience with Link is comparable to the experience of a parent whose child is profoundly autistic and who has had to bend their entire lives around autism management. As with any community there are social rules, controversies, and hot buttons. I don’t know them and so I don’t know if I want to dive in and participate. I don’t need another community. Or maybe I do. Maybe I need friends and guides who have been down the path that I need to walk with Link.

Awkward: (with a side order of embarrassed) My life is full of people who have known Link his whole life. Each time I encounter one I have to decide whether or not to say “Oh by the way, Link is autistic.” I have to decide if saying it is relevant to the person and relationship. I have to evaluate which people will feel hurt/upset if they are not told. I have to consider if having the label will change their interactions with Link in good ways or in unfortunate ways. If I do say something, I then have to watch them react and have emotions about the information. There is also an element of embarrassment here. “Hi my son is autistic, but I’m so clueless I didn’t figure it out until he was eighteen years old.”

Sad: The sadness is not new nor really altered by the diagnosis. It is the same sadness I sometimes feel for my other kids too. I’m sad that things which come easily to other kids are so difficult for mine.

Regret: I do wish we’d had this diagnosis at least a year or two earlier. High school has been really rough on us and we would have approached it differently. The last year has been a crash course in standard educational modes not working and learning to adjust.

Enlightened: When viewed through a lens of “this is autism” many of Link’s quirks begin to make sense. He does not think in words, so when he speaks to us, he is translating. He reports that when he does have thoughts in words it is only because he pictures someone in his head saying the thoughts to him. The fact that he has a specific set of “going out in public” clothes in very bright colors, this is his visual name, a visual signature. There are other things too. I can see why the autism diagnosis is correct.

Quiet: For the past year or more I had this clock ticking in my head, telling me that time was running out. I could see that eighteenth birthday coming. I knew the rules changed afterward. Maybe it was passing that birthday and discovering things on the other side not so different. Maybe it was recognizing that he doesn’t need to graduate from high school on the same schedule as everyone else. Maybe it was Link passing his Eagle Scout board of review. Or maybe it was the new diagnosis. The clock stopped ticking in my head. I’m no longer afraid that I’m running out of time.

So far I’m the one with the most emotions about this. Howard and the other kids found it hopeful/interesting and proceeded with their regular things. I had more sorting to do. Probably because I’m in the middle of an emotional sorting process anyway. Now we see what comes next. I’m hoping for a stable period where we all quietly grow.