Sounds like the title for a low budget horror flick, huh? (Actually– it probably already titles quite a few, but I’m too chicken to look!)
My last post was brought forth due to the interactions I have with ‘outsiders’… people in the store, friends, and family that doesn’t live in our house. I get so frustrated with ‘willful ignorance’ and it is so difficult to know how to approach someone who is ignorant to our situation due to lack of knowledge or a desire to avoid knowledge.
However; there is another source of frustration and sadness– ‘The Others’. ‘The Others’ to me includes Chloë, Killian, and Ben. Killian of course isn’t old enough to really have much of an understanding, and my main issue with him in regards to Marley is that I notice him imitating her occasionally– he is definitely a screamer at times and it’s really hard to know how to approach it when he is growing up and seeing her behavior. Chloë has struggled recently, but once I was able to sit her down and talk to her/read to her/watch videos with her about Autism/Asperger’s and what it is like to be a sibling of a child on the spectrum, she did a 180 in the way she interacts with Marley. It was like it suddenly clicked!
Tonight, though… my frustration is with Ben. I keep things very private even on my personal facebook about our relationship, being careful not to use my wall as a place to vent. The feelings I’m having right now, though, seem to come back to having a kid on the spectrum. I feel like it belongs here– I do not want to start some ‘poor me’ thing here, and I really hope I can navigate this gracefully while remaining true to the weight of how I’m feeling and the reality of the situation.
I am a stay at home mom, as most of you know. I left my job as a medical assistant in an 11 doctor practice shortly after Marley was born. I know that by nature, being a SAHM can create a sense of ‘distance’ from ‘the adult world’ and your partner. It’s natural to have frustrations when a parent/partner working outside the home doesn’t seem to care/know/understand/question how you fit 332 hours worth of work into a 24 hour day. The flip side of that is when the parent/partner working outside the home feels frustrated that you don’t seem to care/know/understand/question how they accomplish their job either. Somewhere along the line, in order for a marriage to be successful, you find understanding. You agree to disagree. Whatever– you figure it out.
Being a stay at home mom to a kid on the spectrum seems to add another level to the ‘you have NO clue’ feeling.
‘The Others’ are different in that they WANT to understand. They TRY to. Maybe they really do ‘get’ it, but even I have moments where I am at a loss as to how to handle all of Marley’s quirks.
I do my best not to bombard Ben with the daily goings on. If I have had a rough day, I’ll mention that, but I do my best not to get into a ‘who has the most stressful job’ contest with him.
Sometimes, though… like today… I’d really like to say, “THIS is how my day goes— this is how nearly every day goes!!”
- Broken sleep not especially due to nursing Killian/cosleeping, but due to hearing you snore and not being able to fall back asleep. (Though this has gotten much better since we purchased a memory foam mattress!)
- Wake up when your alarm goes off at 5:30am or just after and hear you in the bathroom/shower. Fall back asleep and wake up as you leave/say goodbye. Fall back asleep &/or nurse Killian.
- Wake up to Marley in bed with me no more than 20 minutes after you leave.
- Wake up to Killian who has noticed Marley in bed and wants to play– it’s not even 7am! Also, Marley MUST wake up on her own.
Waking her before her body does is not good for anyone involved– and the effects will likely last all day.
- Eventually Marley will wake up and we head downstairs for breakfast.
- Every weekday for the past…. 3?? months I’ve made chocolate chip pancakes. Typically with fresh whipped cream. It took Marley 2 months to figure out she only likes whipped cream– no butter or syrup; however, I must ask her each morning to be sure it hasn’t changed. I must also ask if she wants the whipped cream on TOP of the cut up pancakes or on the side.
- If we’re out of any of the ingredients, it’s a catch 22– if I tell her, she may become completely overwhelmed and state something like “I can’t eat anything” or “I don’t know what else I can eat”, but if I suggest we go to the store later, that brings on the ‘it’s too cold’ problem.
- Dish total by the end of breakfast: 13
- After breakfast, I wipe down the whipped cream monster, I mean Killian, and typically Marley wants to turn on Netflix. She loves Rocko’s Modern Life, Rugrats, Mary & Max, and a few other things.
- Netflix isn’t working. Suggesting a movie we own is like Meltdown roulette.
- Suggest she get dressed if she’s running around in panties. Often she’s in the same outfit (with new panties) that she’s been wearing for most of the week.
- About 20 minutes after breakfast she’s hungry. This continues at least twice hourly until lunch. I’ve finally figured out she’s seeking sensory input– breakfast is usually sweet and soft (though I have been tossing room temp chocolate chips on top of the cream to add another texture). So it begins– the game of ‘what do you want’? At times she seems so hopeless, as if she’s searching for food on a desert island. Do you want an apple? Crackers? A banana? Marshmallows? Juice? Water? Yogurt? Shredded cheese? A jelly sandwich? A peanut butter sandwich? Noodles? Pasta? Apples with peanut butter? Cereal?
- She sits down with her snack and I offer Killian his own serving. (It cannot come from HER portion, though.)
- Killian touches her food. Game over. (This is another new peeve of hers. Another person’s food/body/fluid/breath touching her food immediately renders that food inedible. Her food put onto the plate I used to cut Killian’s (same) food before putting it on his booster tray– inedible. They are both eating yogurt– Killian drools yogurt colored drool– her yogurt is inedible. She’s eating noodles, drops one on the table– if it A)gets squished under the bowl and she sees it or B) I scoop it (unsquished)back into her bowl– the entire bowl is now inedible.)
- Suggest Marley get dressed if in panties or to change panties if she’s in days old clothes. Suggest she brush teeth/pee/etc.
- Meltdown roulette.
- At some point we’ll head up to the playroom and tinker around in there– she prefers to venture up with Killian and they leave me behind often.
- Lunch is a delicate game of 20 questions. When we figure out what she wants (typically the same thing for weeks at a time, but there’s always the day you have to figure out what that is, or the day that you have to name that and everything else before she suggests the same meal from the previous days on her own. For a while it was oodles of noodles. I was under strict instructions to ‘make them like Grandma– and don’t forget the LOVE!!’. I got away with rinsing them to cool instead of using ice cubes, but last week I tried to switch to the lower sodium kind– now she won’t eat them at all. After that, she wanted pasta and I had to offer every shape in the pantry, allowing her to sample dry noodles to help her pick. One night I thought I would be smart and cook an extra serving or two for the next day. I didn’t want them to stick together, so as I was cleaning up after dinner I put the tiniest swirl of extra virgin olive oil in, stirred, and stuck them in the fridge. I immediately worried that Marley wouldn’t eat them, but knew I’d be rinsing them to heat them anyway, so it should be ok. I rinsed them a few times in hot water until just barely warm and spooned out some for Killian. I then rinsed them a few more times until they were hot/cool enough for Mo. We’re talking a lot of water going through these things. Killian was munching away happily and suddenly after a bite or two Marley exclaimed that these taste “DIFFERENT!!! They are nasty. Something is on them and I cannot eat them.”. There was no going back and it was downhill from there as one was ‘broken’… oh goodness.
- Suggest other foods while my food (if I’ve gotten that far) gets cold. Meltdown roulette.
- Dishes after lunch: 13+10
- At some point in the afternoon, we’ll attempt to fit in a homeschool activity, either formally or with something hands on/life skill based like counting how many rolls we need for dinner. She and Killian will play and bicker.
- If the weather doesn’t suck we might end up outside in the blasted Barbie Jeep. At some point she’ll get hot which will make her itchy.
- It’s not long before we’re back in ‘What does Marley want for snack?’ land. Today it was carrots. I peeled a carrot for her and another for Killian. A quarter of the way through her carrot, she came into the kitchen so frustrated she literally couldn’t form words. I was trying to help her by suggesting words so I could figure out what happened (note: HORRIBLE idea.) and finally she spurted out ‘Killian’s carrot TOUCHED mine and now I cannot eat it. I am throwing it in the trash.”
- Heaven forbid we have to go somewhere– her clothes have now all been deemed ‘too tight’ (after getting rid of the ‘itchy’ ones) and getting her to wear climate appropriate (since ‘socially appropriate is long gone) clothing is a battle. I let her dress in whatever she manages to find comfortable and keep a blanket in the car.
- Oh, this is of course after her insisting that she doesn’t want to go anywhere. 800 times. Loudly.
- Since I’ve decided that ‘A trip to the Arctic (a.k.a. The Grocery Store)’ should be its own post, I’ll leave out today’s adventure there. (Let’s just say that couponing + a toddler + meltdown roulette= OH.EM.GEE. GetMeOut!!)
- Over the course of a day, I will be asked no less than 20 times: “Can we go see Cam (my brother)/Heather (his girlfriend)/YaYa (my mom)!?” (they live 2 houses down and aren’t home during the day often); “Can I go back to my old school (preschool)?”; “When is Chloë coming back?” (I don’t know/not soon enough for you.); “Can I have a sleep over with _insert perceived friend’s name here_?” (we’ll see… aka– no.); “Do you remember when _insert things she remembers better than I do_?”; “When can we _insert road trip/fun thing/vacation_ again?”. But that’s not even the fun conversations– the fun ones are about her seeing ghosts or recalling an event she really shouldn’t remember.
- At some point Killian will nap. Hopefully.
- Marley won’t. Not unless I trick her into ‘resting’ or send her to my room due to behavior (and because she’s acting out as a result of needing sleep, she’ll sometimes pass out). Most often, she sees Killian’s nap time as an opportunity to snuggle since I have open arms after I get him to sleep.
- There’s still 13+10 dishes in the sink and you’re going to be home soon. If we haven’t left the house today, I’m still in my PJ’s. I probably have to pee. The living room looks like the apocalypse hit. Our bed’s not made because Killian just got up from a late nap– which means bedtime will be a 3 ring circus. Did I brush my teeth today?
- Marley is hungry NOW. She won’t/can’t eat our dinner anyway, so I go back through the lunch routine of ‘what will you eat?’.
- “No, you ate the last _food of choice_ yesterday and you didn’t want to go to the grocery store today to get more, remember?”
- Meltdown.
- “Oh hi, daddy. Welcome home.”
And really, I’ve left out all the ‘typical’ stuff, like diaper changes, a potty learning toddler peeing in the floor, normal sibling issues, etc. Also, it’s hard to recall every single thing in a day that ‘triggers’ Mo, so I’m sure a lot of that got left out as well.
I’ve come back to this post so many times thinking I should keep it private or delete it… Maybe it’s too hard to read… it all kind of runs together…
That’s the point though, I guess.
"Marley, stop..." 