Alex
Alex's graduation party was yesterday afternoon. Our neighbors came and several folks from church stopped by. They brought cards and well-wishes. I had a hard time staying in the front room with so many people and decorations. Matthew let me know he was starting to feel overwhelmed, too, so we moved to the living room together. That was nice. A toddler wandered in with his mother close behind. Matthew was instantly in love with this kid's cute little feet and big eyes and toddler movements. When the child came up to him and gave him a big hug, Matthew just about died with happiness. We ended up outside, which felt great. It was absolutely perfect weather--sunny, warm, cool breeze, very low humidity. The older boys started playing with the hose and the toddler started exploring my garden. Other people started coming outside. My friends. They weren't too terribly surprised that I would throw a party and just hang out in the backyard most of the time. For the record, this was Alex's party. I really enjoyed chatting with my friends. I managed to pawn off a few pounds of fresh spinach on them. And even the first of the broccoli! The next round of spinach will go into my freezer. I sure like giving it away, though.
Alex recently received a diagnosis of high-functioning autism. He's average or above average in every assessment except the one where he was shown pictures of people and asked what they might be thinking/feeling based on their body language and facial expressions. He said that was pretty difficult. I'm not sure what to think about that because Alex's superpower has always been an awareness of what others might be thinking and feeling. He is glad to have the diagnosis, though, because it's officially a disability that allows him certain concessions from teachers/employers in the future: more time on exams, less or modified group work, and a quieter space to take exams. He has decided not to seek social therapy at this time.
On Easter weekend, five weeks after turning 18, Alex got a tattoo. It's a stylized cicada on his left forearm. I knew it was coming. I thought he might change his mind. He didn't. He loves it. His friends love it. I do not love it. I can't even stand to look at it. The tattoo marked a significant and unforeseen change in how I perceived Alex. He had made a forever decision, knowing full well Bobby and I wouldn't like it, and it was absolutely within his rights to do so. He had set a boundary. Made a statement. It wasn't "rebellion" so much as "agree to disagree."
Robert
Robert has been stressed about the end of the school year and finals. His bedroom door is literally falling to pieces, so he has to slam it in a certain way to close it at all. We have another door in the works, but it's a steady source of frustration for him. I broke Robert's trust this week. I have a pretty solid agreement with Alex and Robert that their rooms are THEIR spaces and I won't go into them without permission, or unless there's a pressing concern. Well, I exaggerated a not-so-pressing concern and went into Robert's room while he was at school. While there, I saw something that had been "missing" that Robert was giving me a lot of heat about. He somehow forgot that he had put it into his room already. I also noticed that the bed linens hadn't been changed in some time, so I took those out to wash. In some other families, this wouldn't be a big deal. In our family, where privacy and boundaries are so, so important to my older kids, we had a lot to talk about. On both sides. It wasn't pretty. We sorted it out, though, with both sides promising to do better.
When Robert is stressed, everything annoys him even more than usual. Especially me, for some reason. This morning, as our family drove to church, he made a comment about his smaller muscles aching after a workout which was different from how his larger muscles just feel tired/spent and don't ache at all after a workout. I replied with, "Huh." A few minutes later, as we walked into church, Robert started to explain why that answer had actually made him very angry and how he would be less angry in the future if I were more sincere and less dismissive of something he found really interesting. Do you want to know why I answered with "huh"? It's because I found it an interesting fact and I had nothing more to add. Also, at that exact moment, I was preoccupied with Matthew's usual Sunday morning anxiety attack. We had just barely managed to get him dressed and in the car. He was quiet for the moment, so somehow Robert understood that as a good time to share his interesting observation. I didn't have much more to give than a "huh"at that point, but if I did, I would be walking into a mine field anyway. I think I've shared this on the blog before. My genuine interest in any information he shares with me often ends in 1) a scolding lecture about "I just wanted to tell you something, so don't get all involved" or 2) him storming away because I don't understand the simplest things and I don't know how to answer the simplest questions. I swear we speak different languages. Anyway, after church, Robert continued to express his thought process and how my answer was the perfectly wrong thing to say...how his friends understand him and respond to him just right...how he and his friends are willing to change their behaviors out of consideration for each other...how he thinks that I'm not changing enough for those around me, for him, out of consideration for their comfort. I informed him that I do, in fact, change my behavior frequently, every day, out of consideration for others' comfort. I was too worn out to get angry, though. He felt heard. His mood lightened instantly. He gave me a big hug and a kiss, smiled, and genuinely said "I love you" before heading back to his room.
James
James has a clever sense of humor. He makes me full-on belly laugh. The more stable Matthew gets, the more time and energy I have to enjoy James on his own. We have a lot in common, and he's not too old yet to find that horrifying. He has a mischievous side, which has caused him to adopt the "better to beg forgiveness than ask permission" approach to life. For example, after Alex's party, he took all of the many, many balloons into his room, onto his bed. He's sleeping with them tonight. Another example, he and a friend had to give a presentation in their "Life Skills" class about how to make a grilled cheese sandwich. They earned a "D" on that presentation because it was "a comedy routine", not a set of instructions. He insists that they did actually demonstrate how to make a sandwich, though, because his friend was the cheese and a couple of couch cushions were the slices of bread. The most boring presentation, he said, was applauded by the instructor as an "A+" project. He shrugged. Life Skills is a pass/fail class and he was going to pass.
James' depression and anxiety have improved over the last several weeks. It's a combination of several factors: more sunlight, more time outside, a hobby he's passionate about, and summer on the horizon. James was grounded from computer turns for a month. That got him thinking creatively again. He started building weapons out of scrap metal, wood, electrician's tape, and some leftover hardware from the garage. He gained proficiency with the Dremel, jigsaw, hand saw, metal file, and drill. His completed pieces hang on his wall. And while many of them have pointy bits, not one of them is actually sharp. He tried popping balloons with them this morning and found a mechanical pencil to be much, much more effective than anything he had created.
Matthew
Matthew's anxiety is better managed when he's had enough sleep. We do the same thing every night. Start at the same time, give him the same medications, offer the same quiet, comfortable space, and it's still unpredictable whether he'll fall asleep right away (10%), after an hour or so (80%), or stay up past 10pm all restless and antsy with his mind racing (10%).
Looking back on this blog, I mention several times that we're seeing improvements and that things are getting better. I don't give many examples. The truth is, some issues are getting better and some issues are just as debilitating, but less frequent. For example, getting ready for school used to be one crisis after another. Any mention of "time to..." or "now we..." would send him into a literal panic where he couldn't think straight or make himself do anything. The kid wasn't whining because he didn't want to get dressed, he was freaking out scared like he was in physical danger. We quickly learned not to use those terms.
Now, instead, about 10% of the time he'll cheerfully get dressed, brush teeth, put on shoes, and hop out of the car at school with not a single issue. The other 90% of the time is trickier with a whole range of cheerful and anxious going on. On the rougher days, I've got to shepherd him along with playful games and distraction. Matthew, like many of my kids, when not actively engaged in something, will just follow me around the house talking to me. I've used that tendency to get Matthew into his room. Then, while he's talking, I pull off his pajamas and get him dressed. Sometimes the anxiety is so bad, though, that he's not talking pleasantly. He's freaking out. He can't uncurl his body. I talk playfully, use silly voices, make absurd observations, and try to nudge him into talking about something he enjoys. His body relaxes some. Sometimes he goes limp or rigid on purpose to make it more of a game. Sometimes that's fun, sometimes that's really, really annoying, but I keep a level tone and just keep playing until I've finished dressing him.
Then, if it seems like he'll cooperate, I walk to the bathroom, put toothpaste on his toothbrush, and hand it to him. Sometimes that triggers panic, "How much time until we have to leave? Oh no! I'm freaking out. I can't do this!" so I end up brushing his teeth for him while he tries to freak out and hold still at the same time. More playful talk, light tone, and gentle nudging to get him talking about something he likes. Once he's back on track, I walk to the mud room and pull out his socks and shoes. He's not oblivious to what I'm doing. His anxiety level rises as he senses the "time to go" is coming near. Sometimes he sits down and I put them on his feet. Sometimes he takes 5-10 minutes to put them on himself. Sometimes he's too stressed/anxious to move and I lay him on the floor to put on his shoes. Then I put on his jacket. We head out to the car. He might be calm, he might be anxious, he might be crying. Often, he's mostly fine until I turn into the school parking lot. Then he gets so anxious he begs me to pull out of the drop-off line so he has a few more minutes to collect himself. Collecting himself typically takes 10-15 minutes. It involves having a conversation with a clearly defined end. He can't leave an unfinished conversation. It involves a game of snakes and ladders or braiding fast food napkins into a rope or sucking on a piece of candy. Whatever it is, pointing out the time or asking about whether he's ready now is an explosive and self-defeating choice. I put on a whole lot of calm tone and feigned cheerfulness until he's stable enough to get out of the car himself. If I push it, he sobs desperately, shrieks, panics, and curls up. I have tried to extract him from the car against his own will. That was an ugly mess. I've tried being stern and forceful, practically yelling at him to get out of the car in the drop off line. That also was an ugly mess...in front of teachers and school administrators.
Repeat this fiasco 5 days a week, but only 90% of the time. His teachers don't see any of this at school.
And then there is the weekend. These have not improved whatsoever. Saturdays are bad, but Sundays are much worse. Saturdays, he has several chores to do before he can get a computer turn. He avoids them, of course, but without a schedule or structured day, he defaults to anxiety mode. That's when he starts to panic and comes to me saying, "I'm stressed." I always ask, "About what?" and he always replies, "I don't know! If I knew what the problem was I would tell you." Sometimes I can suggest something to do that redirects his attention. That works for a while, but the anxiety always comes back. Sometimes, there's absolutely nothing I can do (I'm in a zoom meeting, I'm in the middle of another child's crisis, I'm in the bathroom, I'm totally out of ideas, I'm too worn down to try anymore). That's when the "stressed" feeling escalates...rapid breathing, racing thoughts, wide eyes, hands shaking, crying. If we don't or can't intervene at that point, it spreads to his whole body. He curls up on the couch or floor, gets rigid, scream crying over and over that he just doesn't understand. Eventually the crying turns into simple screaming. Terrified screams. Like he's on a roller coaster going 80 mph and it may never stop.
We've tried everything to break the downward spiral at every stage: walks, jokes, reading, music, piggyback rides, talking, singing, making lists, exercise, food, snuggles, pressure, swaddling, ear phones, dark, light. There is a point in the spiral where every external stimulus is simply too much and every action makes it worse...except one...screen time. Video games. They are so mindless and distracting and predictable that it gives him a chance to reset. Watching a movie or show isn't the same. Neither is an audio book or physical book. They don't help nearly as much.
Sunday is a lot like Saturday, except with fewer allowable activities and more social pressure. Getting Matthew to church is like the school morning routine, but on steroids. Managing his stress during Sacrament Meeting is akin to running a 3-ring-circus in a pew (fidget toys, snacks, water bottle, scratch art, stuffy, constant interaction). The closest I can get him to Primary is me in his classroom and him sitting nearby outside the classroom with the door open and all of his pew/comfort/fidget items available. The closest I can get him to Singing Time is if I'm sitting next to him in the very back of the room with all of his pew/comfort/fidget items available. Even then, there's a simmering pot of stress that just won't settle. Sometimes he'll participate in Singing Time if his name is chosen, often he won't. He just panics, looks at me with those wide eyes, clenches his fists, starts to hyperventilate, and begs for me to tell them, "No thanks, not this time" before he accidentally cries or screams and embarrasses himself in front of everyone.
Repeat this every weekend.
When I am out of town or away from home, Matthew calls me in a panic, "I'm stressed." And since there's very little I can do over the phone, it usually just gets worse and worse until Bobby finds something powerful enough to intervene. Then, a few hours later, Matthew calls again in a panic, "I'm stressed."
So, things have been really hard with Matthew over the last year. What I have seen since he started therapy and this new medication is more days where he happily gets dressed on his own and hops out of the car at school with a wave and a cheerful, "Bye, Mom!"
Some days now, he's just a regular kid where triggering situations don't trigger him and his stress doesn't escalate and he's free to be the awesome kid he is. He's never had an anxiety-free day, but the good days are pretty good.
I've recently started letting him sleep in, even on school days, so that he wakes up naturally. It doesn't solve all of the anxiety, but it helps. It makes everyone else's morning go better, actually, when Matthew is still asleep. I get more time to talk with James. Folks move smoothly from one task to the next, getting their stuff done without constant attention from me. I don't have to gloss and joke and cajole and choose my words/timing carefully just to get people out the door on time.
What.
A.
Relief.
Matthew recently received a diagnosis of dyseidetic dyslexia. It's a mild enough impairment that regular reading/spelling/memory therapy this summer could help him immensely. Yup, I'm totally signing him up for that. This particular form of dyslexia also makes it very difficult to learn times tables. Matthew's current 4th grade teacher offered to tutor him this summer using dyslexia-specific math strategies. Yup, bring it on. Matthew's okay with the idea for now. Let's see how it goes when it's "time to" get ready for these tutoring sessions.
Me
Matthew takes a lot of energy. Bobby, James, Robert, and Alex need my time and energy, too. I want to be there for each one. I want to talk and laugh with each one. They each have a unique set of challenges that I want to understand. I try to give them enough, but Matthew truly gets the lion's share these days.
I went back to therapy myself the other week. I thought things with Matthew and the transition of having Alex graduate warranted some help. I updated my therapist on everything that's happened in the three years since I saw her last. I did NOT want to cry. I didn't want to feel anything, actually. I wanted to talk about it on a high-level academic sort of plane and come up with a plan of attack. Then my therapist asked about how my grieving for Alice has gone. I hadn't thought about that in years. I DID start to cry then, and I got angry. Am I still grieving Alice?! I steered the conversation elsewhere ASAP. Later, I was talking to Alex about it and he asked, "Why didn't you want to cry? I love crying at therapy. That's the best part." I used to feel that way, too. The only answer I had was, "I don't have time to cry." And that made me want to cry again. Ugh.
I don't think I can process my own grief and stress when it's already taking everything I've got to keep Alex, Robert, James, and Matthew afloat. What if stirring up all of this stuff in me makes everything worse for everyone? Or maybe I'm just afraid to face those old wounds again. Double ugh.
Whatever. I'll continue to go to therapy. It does help once I let it in.
Bobby
We still don't have many answers for why Bobby is feeling so crummy these days. Every physical system has checked out, but he's experiencing chronic low-grade pain, poor sleep, and low energy. He's able to keep up with work, home, and church responsibilities. He's just always worn out as well.
All of this is the new normal.
How's that for something accurate and interesting? And forever long :)
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