Folks often ask me what it's like to be the mom of a child on the spectrum. I've answered it a MILLION times. What it feels like emotionally, what it feels like as a mother, what it feels like as a human being with feelings and needs all my own. But, I'm not confident that I've ever accurately described the physical logistics of a "day in the life."
So, here, my friends, you have it.
Take today for example. Now, you're going to get my crazy mom shit thrown in there because that's part of my day, too.
I got 4A and 4B on the bus. Shlepped 4C and 4D to my mother's, who gives me the amazingly generous gift of free babysitting on Wednesdays. Run an errand (my dear friend is battling stage 3 pancreatic cancer, and I cook and clean for her on Wednesdays). Today, I had only a moment to throw her food in the fridge and freezer, partake in a quick chat, and haul ass home. Cleaned up the mountain of dirty dishes. Ran to the basement, setting my timer for 30 minutes, to measure out the kids' gifts into their stockings so that I could finalize my shopping list (more about the crazy Christmas prep in a future post). Grab my stuff, head out the door to the kids' school. Volunteer for their teachers, observe 4A in writing, take care of sundry school responsibilities.
I happen to run into one of 4A's teachers while I'm there. We've been struggling a lot in this particular subject this year. I first found out about the struggling in late September when I asked an unrelated question. Got back a laundry list of examples of 4A's inflexibility. 4A is unwilling to take other students' perspectives or direction on her work. An Aspie? Unwilling to take others' perspectives or direction? Imagine that.
Shortly thereafter, we start to have a LOT of trouble with remembering homework materials and recording assignments. Earlier in the year, a classmate had forgotten his spelling words but called a friend. Classroom teacher applauded the classmate's efforts to the class as good problem solving. I fully agree! My dear Aspie heard, "I don't have to take my stuff home; I can just call a friend." Next night, 4A forgets spelling and wants to call a friend. I let her because I didn't know about this classmate example-making business. A few days later, she forgets her math book. It so happened that I had to be to school early the next morning for a PTA obligation, so I let her tag along, grab her math book, and do the homework before school. Bad idea; she heard, "I don't have to take my homework home because mom will take me in early the next morning to do it." Next night, she forgets her materials again and has a first-rate tantrum because I won't take her to school early to do the work the next morning. It's my fault, don't you know, that she can't do her homework. Am I in third grade? Was I assigned math journal page 42? I think not.
So, new bright-line rule for 4A. You forget your materials, you may not phone a friend, you may not go to school early. No way. You forget to write the shit down or bring that book home, you miss the assignment. No problem. Except there's no consequence, in her terms, for a missed assignment. At school, she gets a "missed assignment" stamp on her paper, I have to sign it, and she returns it to school. That's it. Oh, and of course, it affects her grade, but she could give two shits about that. (a) She has no idea what a "grade" is, and (b) a grade deduction isn't immediate and doesn't "hurt." It hurts typical kids because they don't want to disappoint their parents or their teachers. That "hurt" is a social construct. 4A has social deficits because of her autism. So, no hurt. At home, I make her do the missed assignment the next night, of course, through flailing and whining and X charts and loss of privileges. Fun! You think that'd be enough to disincentivize her ass to STOP FORGETTING TO WRITE THE SHIT DOWN AND BRING THE SHIT HOME!! Nope.
The brilliant Dr. Steve solved the problem. His plan is working well...until she finds the next loophole. But, he'll fix that loophole, too.
Okay. So back to reading. Admist this difficulty self-managing materials and assignments, come to find out that we're having what appears to be substantive difficulty also. After some observation and digging, I realize that we're actually having difficulty being an Aspie in a typical classroom, but we've stymied there. 4A is half-assing her assignments: picking character traits that are only marginally on point; picking textual supports that don't actually support the idea; getting stuck on a minute, unimportant detail in a story and clinging to it, no matter how off-base. There seems to be some debate between the parties involved as to the cause of this. I'm clear. Dr. Steve is clear. SPED is clear. Clarity then ends.
Trying to figure out how best to support 4A in this subject has been a struggle. There's a confusion about terms, whether or not support is necessary, and how to draft supports. SPED is helping, Dr. Steve is helping, reading teacher is trying. We are not progressing. We are far from fully attacking the problem, but it seems our feet our stuck in concrete. Too many cooks in the kitchen, not enough face-to-face meetings with all parties involved, and lots of days off in between.
We'll get there, of course, but progress is S.L.O.W.
So, I have this chance run-in with the teacher. Grab 4A 45 minutes early of dismissal and shlep 45 minutes in the rain to her regular checkup with her pediatric neuropsychiatrist, the amazing Dr. G and the wonderful prescriber of Zoloft, the miracle drug! While there, she asks about school, I relay a detailed version of the trouble, and she makes her recommendation, which isn't my first choice. We're there for NINETY minutes. Meanwhile, I had to wrangle my mom into picking 4C up from preschool, making the 20 minute drive back to my house make sure she'd be home in time to get 4B off the bus, and feeding the little 3 dinner while I was gone because shortly after 4A and I returned, we had to run out the door for 4C's choir practice.
While at choir, I text 4Daddy, who is conveniently out-of-town on business, to schedule a call to discuss all this school stuff before our triennial review IEP meeting tomorrow (which is at 9:45am on a day when I don't have a sitter, so my DAD is taking 4C to ballet and jazz and wrangling 4D so that I can attend; how I would love to be a mouse in that corner). At choir, I settle a HUGE skirmish between 4A and 4B over a DSi game. Yes, a DSi game.
Leave choir, throw little 2 in the tub while wrangling the older 2 in and out of the shower, using a visual timer for 4A so that she's not in there for 20 minutes and then using that visual timer again to manage the skirmish over the fucking DSi game that I'm now dying to throw in the trash after bedtime.
Get everyone to bed. May I toot my own horn to mention that they were all in bed only 40 minutes after we got home from choir?! Toot! Toot!
Run downstairs to clean up supper dishes, pack lunches for tomorrow, and take out the trash. 4Daddy calls at 8:15 as scheduled. Hash through it all with him for a half hour.
Saddle up to the computer for two hours to dig through all emails between myself, teacher, and SPED to gather pertinent details. Scan recent classwork. Draft email to Dr. Steve for input on this issue, including Dr. G's viewpoint b/c Dr. Steve will only know Dr. G's viewpoint if I share it with him. An autism parent is the case manager. Docs and teachers and others stay in the loop only because the parent makes said loop and keeps it vibrant and healthy. Attach classwork, scaffolding assignments that I attempted on my own with 4A a few weeks ago when this issue first seemed to arise, checklists written by SPED and teacher and myself, feedback SPED gathered from teachers on the issue. Send it off.
Print out copies of Dr. Steve and Dr. G's recommendations for the triennial IEP review tomorrow, making sure that I have copies of recent classwork and documentation of prior testing and diagnosis.
Tomorrow, I will meet for what I hope is only an hour to tackle the issue of triennial review and raise the recent struggle so that we can set another meeting to better tackle that.
And, I, praise be to God, do not have a paying job. I have the highest respect for those autism parents who wrangle work, family, and autism. I don't know if I'd have the strength, courage, or stamina.
The upside of this day? My babies are happy and healthy and breathing. We have our house and a steady paycheck. We have Dr. Steve and Dr. G. We attend an amazing school. We get a lot of support from my parents. 4D is starting to say three-word phrases and will likely end speech therapy in a few weeks. It's almost Thanksgiving. I don't have cancer. I have a partner. That partner loves and supports me even from afar. I'm an American. I was able to have my babies all on my own without help. I know who my parents are, and they love me. I have supportive friends. I can read and see and breathe and walk and cry and take other people's perspectives. I have an education (and I ain't afraid to use it!). We made it through this crazy day and no one got hurt. I'm breathing. It all goes up from there, friends. It all goes up from there.