Advertisements
Tag Archives: parenting

Everyday Caregiving

6 Nov

It’s the things we do by rote, things that have become second nature, things we don’t even realize we do until someone looks at us with one eyebrow raised and a “Well, that’s weird” expression. Things we do for a teenager who should have been doing these things for herself years ago. Things we avoid in order to keep the peace.

Those things have become our norm.

I am Maura’s mom. I am also her full-time caregiver.

A mom teaches her child life skills so her child becomes an independent adult. A caregiver fills in where those life skills have been hampered or have no developed. Two very valuable vocations, one pays crap, the other doesn’t pay at all. Lucky me, I get to do both for free.

Good thing my boss is so cool.

Today, I did things for Maura like wash her hair, blow dry it, helped her get dressed, helped her turn on a show, helped set up her tablet so that it could charge via extension cord. I threw her clothes in the washer. I shall throw them in the dryer, and put them away for her. I took care of other needs she had that I won’t get into.

I also watched her pull out pizza boxes and dish herself up some cold pizza for breakfast like a regular teenager, intervened when she picked a fight with her sister over the use of the television, and fought her for the chocolate her brother gave both of us.

There’s so much normal interspersed with the extraordinary. And the thing is, the extraordinary I do for her is something expected of all moms when their children are infants, toddlers, preschoolers. That stuff extended its need naturally. It’s not like one day she was blow drying her own hair and the next day I had to do it for her. I’ve always had to do it for her. Someday she may be able to do it on her own.

And that’s the hope I’ve been given. For each task I do for her now, each act of caregiving, I still have the hope that she can manage it a bit on her own someday. Any step of independence, no matter how small, is huge. Last year, I still had to prompt her to get out of the bath. And by prompt, I mean plead and bargain and empty the tub first before being able to pry her out of it. Her ending her bath on her own is amazing.

She also now will let the dogs out or back inside when asked. She can take her plate to the kitchen. She could someday empty the dishwasher or take bagged up trash to the garbage can. She can help around the house, which would be awesome.

But for now, I’m still cleaning her room.

Outside of the house, it’s a balance of giving her freedoms and keeping her on target. There’s verbal prepping that I must do, triggers to watch out for, and always on the look out for quick exits and restrooms, depending on the emergency. It’s how I’ll try to park so that she has extra room to open the car door without hitting another car. It’s worrying the few times I let her go into the bathroom alone. It’s hoping we can hit three stores only to change plans after one. It’s both an opportunity for self-advocacy and a lesson in following rules and taking turns. Mom needs to go to the dog food aisle. Yes, we can look at clothes. No, we’re not going to the toy aisle today, you already picked out a book.

It’s letting a stranger ask her a question, and waiting to see if they understand her before stepping in to provide translation of what Maura said. It’s letting her move at her own pace when the person behind us thinks we’re going too slow. Which happens a lot. On stairs. It’s backing her up in her the right to own her space in this world. It’s letting her choose the music in the car, even though shotgun should shut her cakehole because driver picks the music.

It’s letting her choose her backpack, choose her jacket, choose if she wears socks with her shoes. It’s standing back to let her put on her own socks and stepping in to help with the shoes. It’s cutting her fingernails.  It’s fixing her plate at dinner time because she will overfill it. It’s letting her pour her own drink. It’s pulling back her hair into a pony tail every time she asks, but asking “Do you want one or two?” first. It’s putting sheets on her bed because she just. can’t. do. that.

It’s finding the energy to go watch when she says “Watch Mom!”. It’s sitting to watch a movie for the 87th time because she’s patted the seat next to her on the couch. It’s high fiving her, hugging her, tickling her because she still needs those things constantly. It’s me at my friend’s party, being the one checking on her teenager every five seconds while on the swing set – partially for safety reasons, and partially because the girl is enjoying herself so much, I can’t help but mirror the big smile on her face.

It’s everything, all the time, twenty-four hours, seven days, 52 weeks, and so on, and so forth, world without end, amen.

I’m lucky she puts up with all my interference.

I’m lucky that this very cool kid lets me hang out with her.

I’m lucky that when I leave, she misses me, and when I come back, she gives me the rockstar treatment, screaming and laughing and hugging me now that I’m home.

I’m lucky that she makes this dual life of mom and caregiver not just easy, but fun.

It’s exhausting at times, and the pay, as I said, is less than crap. But the rewards – getting a front row seat in her amazing life – are worth it.

 

 

16998031_10154232628497513_3618393948561497383_n

[photo of Maura, long brown hair hanging down, pink jacket and gloves on, face beaming as she enjoys a rare PNW snowfall]

 

 

Advertisements

I think I’ve reached my capacity on kids movies

25 Sep

For some reason, Maura HAD to have a copy of “The Lion King” – a movie that, until now, I’ve never actually watched.

I mean, I’m sure my kids have watched it, I know my boys watched the spin-off show “Timon and Pumba”, Miriam’s choir did the full “Circle of Life” song last year – but somehow, I missed actually viewing the whole movie.

Thanks to Maura’s need to watch movies 3928 times in a row, I have now watched “The Lion King” – or as I’ve dubbed it, “Simba Doing Stupid Things”.

Really Simba, your father is James Earl Jones, you shouldn’t be this dumb. And really? You’re gonna follow Uncle Scar around? And watch him kill your father and slap your mother around, only to trust him enough to walk away? His name is Scar! He has a British accent! Come on already!

Again – I shouldn’t be left alone with kids movies. Especially ones where one of the main songs is “I Just Can’t Wait to be King” – a happy song about eagerly awaiting your father’s death so you can snatch up all the power. How very Shakespearean.

And then I discovered that Matthew Broderick was the voice of grown Simba.

Matthew Broderick.

Matthew.

Broderick.

giphy1

My friends were all “How did you not know this?” and I was all “I DON’T KNOW!”

Seriously, I don’t know how I got through the past 23 years of this movie’s existence not knowing Matthew Broderick played Adultish Simba.

Proving that no matter what your age, there’s always something new to learn.

Like “Hakuna Matata” – sure, it means “no worries” but it also seemed to be interpreted as “Yeah, so your father just died and you ran away because once again, you listened to Uncle Scar and you’ve not thought once that your mother might think you’re dead??? You made your mother worry this whole time!”

Seriously, Disney, what’s with you having characters run off? Snow White…Ariel…Simba…Elsa…okay, Rapunzel took off, but she was literally imprisoned so I support her choice. Disney is just a bad series of “People making poor choices”.

Again, maybe I just need to stop watching them all seventeen times a week. Oversaturation is a bad thing.

I just feel bad for “The Lion King” – it starts off so gloriously…the choir, the scenery, the uplifting song and tiny lion cub, James Earl Jones. “Before sunrise, he’s your son.” – what’s not to love?

Well, besides 30% of the movie being Scar going on about how he’s going to kill everyone.

Yeah, I definitely need less cartoons in my life.

 

 

For the Members of the Public – you’re welcome

2 Sep

Wednesday we went to Target.

I know, shocking.

The girls and I had gone out, done a couple things, and I needed things like eye drops, Keurig cleaner, and maybe new shoes for Maura. Target was chosen for its ability to give us all those things, plus maybe a Starbuck’s if we were all good.

Starbuck’s never happened. Instead, by the end of the trip, I was opening a bottle of Coke I grabbed while in line for the register, and said to Miriam “Momma’s gonna pour some rum in this Coke when we get home.”

#keepingitreal

Maura had a meltdown coupled with a battle of wills. Hers vs Mine. Damn fecking back to school section, the one that caused a serious meltdown the first time we saw it, but that we had overcome and were able to navigate, struck one last time in its death throes. To sum up – she wanted a backpack, I said no, cue 20 minute power struggle.

Several minutes into this, I called Josh for help because Maura was now hugging the backpack to her chest and I was determined to stick to my “I said we’re not getting the backpack.” Sure, I could have backpeddled, but I’m trying to teach her – like I taught all my other kids – that we can’t get every thing every time, especially if we have at least five of those things in our bedroom at home. So every time she put it in the cart, I’d take it out, put it on the shelf, and say “I said no.”

When Josh got there, we were actually right by the doors. Josh gave her the “I hear you’re not listening to Mom” speech, and told her she had to leave the store. We left Miriam with the cart, and I escorted Josh escorting Maura to the car. All the way, I would say things like “We have to leave because you’re not listening.” and “I said I wasn’t buying that for you, and I’m not.” and basically calmly narrating what we were doing and why in a tone that carried.

Not for me.

Not for Maura.

No, I was doing that for you, the public. You, the group of four adults catching up by the doors who paused to look at the scene we were creating. You, the single guy who paused to let us go ahead of him through the doors (btw, thanks). You, the couple walking in. You, the store associates who looked our way.

“We’re going to the car because you won’t listen to Mom. Mom said no.”

I walked with my husband not because he’s incapable of handling Maura, but to give him the presence of another female as he escorted his daughter, who was digging her heels in literally, to the car. A man escorting a teenage girl screaming to a car looks bad. A man and woman escorting a teenage girl screaming looks more parental. I wasn’t walking with him to help, I was walking with him to make sure someone didn’t call security on my husband and daughter.

Because you are all watching, you people in public. You all stop and turn and watch for a moment or two or three, and you watch us. Why? I don’t know, because we’re making a scene. Because the scene she’s making isn’t socially acceptable at her age and height? Because you’re curious or just plain nosy. Because it’s something to tell someone later. Because you want to make sure she’s okay?

I think mostly it’s because you’re nosy. So here’s some facts –

It’s a meltdown. A meltdown isn’t behaving badly, it’s losing control. My job with my daughter is to help her regain control. In this case, as in many, removing her from the situation is the most helpful – she doesn’t have the reminder of what caused the meltdown in front of her.

No, I can’t predict these things. That instance – just happened. She had been golden and responsive to my redirections just moments before. I think the feeding frenzy in the school section set her off. So really, public, this was your fault, not hers.

It’s part of Maura’s learning curve, so we roll with it. Yes, that means sometimes, it happens in public. No, that doesn’t mean I’ll stop taking her out because how the heck is she supposed to learn if she’s a recluse? Not to mention…

No one helped us.

Not one offer of help, or a kind word. There were a couple moms who told their kids to keep moving, nothing to see here, but there was also one mom who didn’t notice her child laughing and pointing at my daughter (she got a stern look and a head shake of “No” from me though.) There were a lot of you going around us, giving us a quick glance or three, and then you went into the backpack section to buy backpacks, thanks a fecking lot for that. Okay, you didn’t know, but inadvertently, you didn’t make it easier.

No one made it easier on us, so why do we have to make it easier on you?

I told my therapist about this incident. She asked how I felt during it all.

“Well, I had to remain calm.” I said.

“Yes, that’s a given. But how did you feel, knowing all those people around you were watching?”

“Honestly? I ignore them. I’ve learned to put on blinders.”

My therapist was impressed.

But I have. I’ve put on blinders to most of the looks, the stares, the whispers and glances. I’ve had to, because none of you matter in that moment. This time was harder because we were in a main aisle, and people had to walk around us. I caught more than I usually do.

Besides, I don’t need to see you there to know that you are there, watching, judging. Everything I do in public to help my daughter is tinted with the personae I put on for your sake. The loving mother not showing frustration – that’s for you, the public. The wife walking with her husband and daughter – for you all. The calm mother stating firmly but never ever angrily how we have to leave the store because we can’t scream in the store – all for you, Members of the Public.

If I had my way, I’d probably be more “OMG kid, really? Get up off that floor now, move!” But I’m not allowed to do that. I’m also not allowed to sit on the floor and cry with her. Just like I’m not allowed to open up a bottle of wine and drink it through the store, even though the store sells wine. I have to embrace the role of saint in public when my daughter’s having a meltdown because my daughter is disabled, and parents of disabled kids are either saints or monsters.

So I’m a friggen saint.

And most of you don’t even appreciate it.

 

 

 

%d bloggers like this: