This has been one of those days.
It's one of those days where I have to dig deep to keep moving. It's one of those days when you could swear that every last thing you touch is destined to turn to junk. One of those days where the frustration is so acute that your heart stays in your stomach all day.
The start wasn't terrible. I actually managed to get out of bed in time to run before Eric left for work. Finally managed to get around the .4 miles (didja see that dot BEFORE the 4?) four times for the first time in a while. Then almost as soon as I walked in, Ryan is not a happy camper. He's refused his breakfast and is saying "I feel sick." Great. One of the keys of understanding Ryan is knowing that there are phrases he learned by rote and tends to throw around. "I feel sick" can mean "I'm tired". It can also mean he doesn't like what you gave him to eat, doesn't understand what's going on and is anxious, or it can mean nothing. Gotta love echolalia.
When asked "what hurts" and "what feels sick" and about ten other variations of this, my senses finally come around to realizing that the one time he's answered this question doesn't mean he can always answer it. He felt a teensy bit warm, but not enough to warrant the fight of the thermometer (yes, any kind... I've tried and even the ear one and the one that goes across his head is a huge fit) and certainly not enough to call the doctor. I mean, we love you Dr. M, but we were just there yesterday! So I asked if he'd like some medicine to make him feel better... maybe he has a headache? He can't tell me, so a little ibuprofen can't hurt. After searching for the medicine cup, I decided it wasn't worth it and grabbed a shot glass from an old Oklahoma institution... and oh my word, I'm not kidding you... he flipped out over the medicine being in the shot glass. Once he got the medicine down, though, he didn't want to give the glass back! I think he decided he liked the way the cool glass felt, and it was heavy. Love my sensory junkie.
So we continue through the day... I put on a video long enough to have my version of a quiet time, and after that I need to start the journal entry for the day. One of the biggest parts of my summer plans is to track the fits, goals, and just the days in a spiral notebook. The idea is that maybe a pattern will emerge, giving us another key or piece to the puzzle. So I get those things out of the way, accompanied by a cup of coffee. Things have calmed now... I haven't been screamed or fussed at in a few minutes, and I figure that maybe Elmo will again be the hero of my hygeine and keep the kids occupied while I shower quickly. A quick glance to the living room and they're being so good... and I smell like a huge armpit. So I do the famous five-or-less shower, and before I can throw shorts and a t-shirt on they're descending upon me. Can't find shorts... oh yeah, they're still in the laundry basket. Run to the kitchen to grab them, and there is a huge brown puddle on the kitchen table.
Yep, I left my coffee out.
And Mae's a climber.
Best part is that this journal that I've begun with all my goals, lists of what Ryan and Richie *can* do as well as the things I want to help them learn, where I've recorded thankfully just the last couple of days as a start, was lying vulerably on the kitchen table. Now it was learning to swim in coffee with too much creamer.
That just felt insulting.
I'd like to say I managed to choke down the tears and swallow the imminent mommy-meltdown, but the truth is there wasn't time for me to melt down, and I honestly didn't have the energy. The kids all needed to be dressed, and it was past time for that. So by the time I got Ryan, Richie, and Mae dressed, the two diapers changed and rinsed, I was able to calmly rip out the affected pages, let a few dry and start over. The rest of the day has been full of dropped this, broken that. Messed up this, inferior job on that. And education? Pssccht. We worked a puzzle and read a book, but not with Ryan.
It's been one of those days where every time I ask Ryan a question he answers with an emphatic "MMMM" or "UUUUUHH" type of fussy scream, sometimes with his mouth open, sometimes closed. That "just leave me alone today" sound. He doesn't want anyone around, especially his siblings. He was lying on the couch this morning and Mae climbed up with him, just wanting to snuggle her big brother (not that he's ever let her before, but gotta love her optimism). He promptly shoved her into the floor, not even remotely gently. She pretty much landed on her head. She was scared and upset at the fall, and I was scared and upset at the shove that landed her there.
I wish I could say I was patient and kind every time he reacted that way, but I'd be lying. If nothing else, he felt my frustration or saw it on my face. And I hate that. But the truth is that I'm human, and I can only take so much of offering someone something I know they like, then being immediately yelled at for speaking in the first place. Sick or not, he gets in these moods, and all I can do is keep calmly saying and signing "say it, Ryan" over and over. Eventually... usually... he either calms down or says what he wanted. More often than not he's just calmed down, at least for five minutes.
So all day, instead of the activities I'd planned, we just tried to keep him from screaming too much. He was pretty much content until this afternoon, and it was obvious this time that he does have a fever. Under his arm... only one I could find... 102.4. Ouch. He really was sick this time.
The good news is he managed to tell me that he wasn't feeling well! The bad news is I've heard "I feel sick" so many times that I almost didn't listen. The other bad news is he still can't tell me what hurts or feels sick. I've gone through all the charades and versions I can think of, and I still don't know where it hurts. We called the doctor and are awaiting a call back, because our doctor is cool like that... and hopefully it's just an ear infection again. That seems to be what happens to Ryan this time of year.
But oh, how I long to hear those three words... "My ear hurts." He will ask for the people train, Miss Staci, to go to Waco, to go to Baylor, to go to the train station... he can quote half of Finding Nemo, for cryin' out loud, but he can't tell me his ear hurts!!! How desperately I want to be able to comfort my son, to stop his hurting, or at least to know where to start. He is so amazing, so smart, so loving and sweet, and yet so scared and confused at something as simple as a band-aid. I'm watching him now, with a dose of ibuprofen on board, walking around sticking the thermometer on daddy's neck, then Richie's... not telling them what he's doing, mind you... but he's caring for them in the only way he knows how.
I don't know why God trusted Eric and I with this young man, but I do know beyond a doubt that God loves us, and He loves Ryan and Richie and Maelynn... and we're all knit together in this family for a good reason. I can tell you one thing... I can't do it alone. The frustrations are too great. The task is too huge. I've heard recently someone say that this Autism thing isn't a sprint, it's a marathon. Pretty accurate... but blindfold yourself, drop yourself in the middle of a huge city, and go find a needle in the street. Every once in a while, you get to peek out from the blindfold... and people come along to tell you you're going the right way. Some don't, but most do. I remember when Ryan used to wake up screaming every morning. That's only been a little over a year and a half ago. It's hard to want to get out of bed when you're met with that, knowing that's mostly what you're going to get all day. It's so much better than it was then. But it's still hard.
Precious Lord, take my hand
Lead me on, let me stand
I am tired, I am weak, I am worn
Through the storm, through the night
Lead me on to the light
Take my hand precious Lord, lead me home
When my way grows drear
Precious Lord linger near
When my life is almost gone
Hear my cry, hear my call
Hold my hand lest I fall
Take my hand precious Lord, lead me home
When the darkness appears
And the night draws near
And the day is past and gone
At the river I stand
Guide my feet, hold my hand
Take my hand precious Lord, lead me home
Precious Lord, take my hand
Lead me on, let me stand
I'm tired, I'm weak, I'm lone
Through the storm, through the night
Lead me on to the light
Take my hand precious Lord, lead me home
-Rev. Thomas A. Dorsey (1899-1993)
I learned that song in high school, and it still helps me speak when I'm too worn, weary and frazzled to begin to explain. I don't have the answers, and most of the time I don't even have the questions. The only thing that is obvious is that we have to keep going. We have to keep improving how we do things, how we assess situations, how we understand, and keep learning. We have to keep DOING it, not trying (thanks, Yoda).
I'm gonna start by scraping myself up, going to my coffee-stained journal, and scrawling how the rest of Ryan's day was. I'm gonna clean up after dinner so I won't have to do it tomorrow. I'm gonna be okay with throwing out the academic, therapeutic parts of days when they're not fitting what Ryan needs. I'm gonna keep thanking God for all we have, and although I mess up so much and have so little figured out, I'm gonna keep doing all I can to be the best steward of this family I can.
Because it's going to be alright. I know it is. It's actually going to be better than alright.
Because God promises His plan, and that's WAY better than alright!
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