Wednesday, July 18, 2012

Thoughts from the Morass

I have no clue how people do it.

I poke around and see what people are doing all the time. Its is easier now that we have Twitter, Facebook, Google, blogs, more blogs, etc. etc. etc. I see what other people are managing to get done. They have kids, special needs kids, families, jobs- they write, not just for their own blogs or magazines or whatever, but several of these. They lecture and publish and still cook dinner. They have hobbies- knitting, baking, gardening, reading. They have fresh news stories to post, which I assume they have read, as they have comments to offer on them. Life goes on, and things get done.

And it is all I can do to say my kids get to bed still alive and fed at night.

I got up this morning. Having been kicked out of bed by sprawling boys, I had spent most of the night in the big recliner. There was a boy in the bed, so I snuggled and smooched on him until we absolutely had to get up if he was going to eat before leaving for school.

I don't drink coffee. I didn't get a shower. I was lucky to get my clothes on before going out to the start of my day. I forgot to brush my hair, but did manage to take my meds and put on deoderant before putting the clothes on. I thought I might try to write a letter to a friend later today, they aren't online anymore because they live on a farm and various other reasons. I have the thought every morning.

It was a lazier morning than usual, because Andy didn't have vision therapy this morning, so I just had Joey to get together. I made him some breakfast- which consisted of putting two danishes on a plate and pouring him a glass of milk, because we snuggled so long- and made sure he got his medicine down. I fed the cats. I packed Joey's snack. I looked outside to check for the bus, and noticed the fledgling on the porch. I quickly flipped open my laptop to make sure I didn't need to try to get him back in the nest, but everything I found said he was OK as long as he wasn't hurt, which he wasn't. I tried to get Joey to look at the bird, but he was already on a Mario spiral. The bus came. I got Joey out the door as calmly as possible, so we didn't frighten our fledgling. I noticed the sunflowers still need to be staked (they are all crooked form the derecho that came through) as I waved my "I love you", and the bus pulled away with a little bit of my heart on it.

Andy had awakened and was coming down the stairs, so no snuggle time for me. More breakfast, then I popped on Twitter and Facebook and the news to make sure the world wasn't falling apart. My friend sent me a message about services for Joey she had discovered, awesome. I told Andy about the fledgling, and we watched him for a minute before heading out to his OT group. We saw the mama bird come land on the porch with a bug in her beak.

As we drove, Andy chatted about his nerf gun needing new darts and missing his vision therapist, and we thought we might get to the Bug Box this morning after we stopped by mom's office. I got Andy to OT, and got the session paid for, then hopped over to the CVS to see if they had nerf darts. They don't. I got a beach chair on sale, because we would be at the McDonald's later, and this McDonald's doesn't have the nice tables with the separate chairs, and the attached benches are the perfect size for skinny preteens, but not for a fat middle-aged mom. I got back to chat with one of the moms from the group, she's having some issues we've seen before. Swapped some info, gave her some names of folks to call, all good. The other mom homeschools. I think she thinks we're nuts to have our kids in public school. As the kids came out, she asked about when the fall session would be. It was thought it would be Tuesday or Thursday, about 4. I noted Andy's bus often arrives at 4, another mom had a similar issue. The homeschool mom proudly noted she didn't care, since she homeschooled. Consensus voted for 4:15, and I noted I could sign Andy up for soccer now I knew when therapy would likely be. Well, his, anyway. His 1:1 therapist is going on maternity leave, so we didn't know when 1:1 would start back up, or what slot we would get. We were supposed to practice "whole body listening" by asking the Andy about cues he could get from body language, what he thought people were thinking based on how they were holding themselves or gesturing for emphasis, and we were supposed to talk about how to learn the "secret language" of social interaction. I pondered how I would also help Andy understand that Joey doesn't "speak" that "secret language" very well, and see if he could figure out Joey's "secret language." I think he can actually "read" Joey better than I can.

We got in the car, and went over the plan for the rest of the morning. We needed to pick up mom's medicine, then go to the office, then perhaps the Bug Box? But Andy didn't want to go to the Bug box anymore. He wanted to go "somewhere fun", then decided he wanted to go home because it was hot. And mom didn't get nerf darts, so he was extra grumpy.

We got mom's meds, and headed to the office to see if the phones got fixed and catch mom up on work stuff. Andy got a soda and a snack, the phones were only sort of fixed- we need to replace the phonesets, and business phones are expensive. Mom's computer monitor was also toast from the storms.  I got mom up to date on stuff and showed her the stuff I had photographed to put up in the Etsy shop. I lost track of time, getting things settled. I got a text from Joey's teacher, he was OK until a game started going wrong for him, then he had pulled out his verbal arsenal and let it fly. Andy played quietly, pretending he had a bookstore. Suddenly, we had to race home, and we got there just in time to get Joey off the bus. The fledgling was chirping in his nest.

We had a quiet lunch, sandwiches, grapes, chips, sodas. Joey had me watch him play one the Mario levels he had designed. Andy was being grumpy because he was still out of darts. I forgot to make myself a sandwich, I got distracted by the begging for me to watch a level. Andy wanted to watch a Shaun the Sheep episode, so I got it on. I checked my email, but there was nothing interesting. I posted something about the nice check I got yesterday from my Cafepress shop. I glanced over Facebook to make sure everybody was OK. Someone had published an academic article. Someone got a new job in a museum. Someone was in London, lecturing at a conference. I remembered I needed to start re-vamping my classes for Fall, we have a new texbook. I checked my email and classes to make sure the students were all good. I answered a couple of questions. I thought about the school supplies that were still in the van, and they needed to come in and be sorted. I talked to my mom, who had a brilliant idea about getting Joey some quiet space, since he's been a little anxiety- ridden lately. There were a couple articles posted in the newsfeed I wanted to read, but they would have to wait. It was time for Joey's vestibular and core group.

Joey chatted about Bowser and Mario and Luigi and then the boys bickered as we drove. They bickered in the waiting room. Andy brought in his gun and a stuffed doll, and pretended to shoot zombies. Two of the kids in Joey's group played along. Joey ran and got an exercise ball out of a therapy room, and I reminded hi, that he needed to ask to use equipment. He ran off with the ball, but apparently the answer was "no' when he asked, because I jumped up to sounds of a scuffle and "Joey, put the ball DOWN." A therapist was wrestling the ball from him, then he shot past me and raced down the hall,  kicking off his shoes as he bolted. The therapy office is set up in a big circle, but there is a back door; fortunately, he decided to do the circuit rather than the door. I think the therapist said something as he went past and I ran past her, hot on his heels lest he now go out the front door. The words were not helpful, something like, 'Joey, go wait in the waiting room" or something like that. The hall was narrow enough she could have put out an arm and caught him, but she didn't. IT was Andy's voice that drew Joey past the front door instead of him bolting through it. The waiting room was a dead-end for him, I got him to sit and have a hug. Another of the group kids came in, and I tried to talk to him, but got rebuffed- he was too anxious about group already. I didn't push it. Group started, and away Joey went.

Andy and I headed to Target to get darts. The end of July is clearance season; the summer toys are cleared out to make way for Christmas merchandising. They had a huge nerf gun on sale for $7. It got purchased, making for a very, very happy boy, who chattered about all the cool things it did all the way to the car. We also got a present for Andy's therapist while we were in the Target. We got back to the OT office, with an agreement that he needed some targets to shoot at in the yard.

Andy shot at his zombie, a parent from Joey's group chatted about a listening program she was trying, and how it was going to cost hundreds and hundreds of dollars to get the equipment in her house, plus the cost of the sessions. The program we did consisted of the cost of a set of really really good headphones, a good CD player, and at most it would have been the cost of the CDs, so about $250 all together- only we rented the CDs from the office, so for us it was only about $150 plus the therapy sessions themselves. I wondered what the program was like that required hundreds and hundreds of dollars just in equipment. I hope it works well for them.

The therapists tried to tell us something about the session, but these folks aren't as good at controlling hub-bub of released kids as Ms. Lisa, the main therapist in the office, is; so we didn't learn much. Apparently, there had been a lot of spinning, and Joey was unused to it, so there was some advice about counter-acting possible side-effects. I caught "suck through a straw," but the rest was lost in the general din and the clacking of the nerf gun.

I got the boys gathered and over to the playplace at McDonalds, as we had 45 minutes to kill between sessions. I sipped a coke in my new chair and listened to some Sherlock Holmes while the boys played- well, what I could hear over the squeals and yells. Some other kids arrived, and there was a rollicking game of hide and seek.

Then it was time. Back to OT we went. Joey saw the temperature according to the car was 101, and started to freak out: "too hot! It is too hot to swim! I'm going to burn! There's hot lava everywhere!"

Joey got happy when Ms. Lisa appeared. Off he bounced. Andy and I hopped back in the car, and headed to a small hardware store. We picked up some reflectors and things to use as targets, and some stakes for the sunflowers. Andy chattered about the targets he was going to make, and how different colors were good or bad, about whether Lego or Nerf would win the Epic Battle, and a smattering of chatter about Smash Brothers. We headed back to the office, where he could shoot at his zombie doll (which is actually a Genie from Aladdin doll).

One of the "targets" is a large screw eye, which I took in and proceeded to screw into a thick dowel for him, and he then merrily used as a target (go figure). I chatted with one of the other moms in the group about some of the trouble she's had with the schools, and she talked about going back to work. Her husband is the one that usually is home, though he also has a job and is a big-time advocate-activist out in the county. We talked about how we are both locals- I grew up in the county, she in the next county over. Her husband is local, too. She chided me for not having a gps anklet for Joey yet. Her son has one, and I know its been invaluable to them. We mention something about how different life was going to be. THe boys are now 10 and 8; we're supposed to be trekking all over India now. She also says something about travel, but having to work for the health insurance.

Ms. Lisa came out, and explained what the kids had been doing this session, learning about social cues and that other people think about them, and cues for determining what people are thinking about. We are supposed to practice at home, asking Joey what he thinks we are thinking about while looking at objects around the room, to see if he can follow another person's gaze or line-of-sight (joint attention skills).

The kids then appeared. Joey looked tired, and practically crawled into my lap. We got him into the car, and decided we should go home and have spaghetti and meatballs for dinner. The boys then commenced bickering. They bickered all the way home, all the way into the door, all the way through the living room. Andy started to watch a video of a Smash Brothers game, but one of the teens in it started using foul language, so he had to turn it off. He got grumpy and stomped into the livingroom, and started shooting Joey with his nerf guns. Joey started screaming about being shot. Ten minutes later, we were back to playing games on the computer and shooting zombies, so I started the meatballs.

The bickering continued, so I screwed up the meatballs, since I was only half- attending to how many crumbs I was adding. Joey gets so upset over his game he sobs uncontrollably; I try to hug him, but everything I say or do seems to just make it worse. My shoulder takes a good knock, but I've had worse.  The noodles goet cooked, the meatballs get cooked, and after another screaming fit over a game and resistance in going to his room to calm down, both noodles and meatballs are consumed.

I started checking my computer. A couple of students had questions. I clean up the photos of the stuff for the shop. I check my social media. A friend was posting about a fabulous article they had written. Three had new blog posts. I noticed my brother had some kind of mention in the Huffington post as a lawyer who also gave lectures and wrote books. I have one of his books in my case for special books, but I haven't gotten to read it. Someone else commented on reading a new book. Another friend had gone for a 12-mile bike ride after work. Another friend was apparently made a member of the Order of the British Empire for their work on Autism. Another friend just finished the quilt she's been working on this month. It's beautiful. Another published article, a published book, a lecturer noting their tidy little honorarium. Another friend has put up a dozen articles- I want to read them all, but when? I think about a video on crocheting I want to watch to try to learn how to do it. My Uncle Lou crochets beautifully. I think about the friend who just came and I got to see her, I wonder how her kids are today, I should call her more. I should call everybody more. I start getting some of the new stuff up online. It's after 7.

JoeyAndyDad arrives home shortly thereafter, and reminds me that I need to get some things from the office. I run out, I try to get something at a store, but I get the wrong thing. Thinking it is possibly the right thing, I happily go to the office and get what I need- a book I need to get in the mail, a monitor. Some yarn that was given to me is still in the floor there. I toss it in a box to send to my friend on the farm, who was teaching herself to knit when I saw her last. I'm not likely to learn to crochet with it, so I should send it up to her and let it be put to good use. I load everything into the car, and I am off. I stop at the grocery on the way home, picking up something I forgot. I head home.

I finish getting the stuff into the shop, but I still have school supplies to sort. Its getting late. I decide it can wait, even though the stuff is all over the livingroom and front hall, along with bins of other stuff I pulled form the car a few days ago. It all needs to be sorted. I have no room to just stick it in the basement anymore. I go upstairs anyway.

The boys want hugs. I get undressed, and a boy comes in for hugs. I try to read some of the articles I wanted to read, but another boy wants attention. I start writing, when I normally would be trying to catch up on blogs I read, grade some papers, maybe get in a few articles. Boys come in wanting attention at intervals. I realize it's almost midnight, as a boy plops between me and JoeyAndyDad. We were supposed to talk about something when we came upstair, I forget what it was. I wonder if we remembered to talk about it. We send the boy back to his room, and I am finishing up this post.

It is now 12:21am.

I have worked on no articles to publish, done no research, not even read the articles about autism other have posted today. I didn't read any blogs. I gave no lectures, nor even started writing one. I didn't even write a letter to my friend... again.

I have no idea how people do it.


farmwifetwo said...

Many only have one child to deal with, many don't work, some have more financial resources and send them off with caregivers, others send them to camp.

Few, do it all, alone. I was and my bp was climbing (take lose dose meds) and telling me that wasn't working well.

I use to do what you did and finally a couple of years ago said "not going to happen" and I work a handful of hours/mth doing books for the farm.

We do extra-curricular stuff - last year was Scouts (eldest) piano (youngest) - during the school year and during the summer NOTHING. I homeschool the youngest about 30min or so every morning. This year only the youngest is gone 2 days/wk to a sitters. Eldest (going into Gr 8) is home all summer.

That's all. I can't do it full time anymore and it was making us all miserable. They have made huge gains over the years, the running was worth it, but no more.

Joeymom said...

I am talking about people who have 2, 3, 4, 6 kids, several with special needs- several with more than one with special needs. They work full-time gigs. A week of camp does not make a publishable book.

I actually work three jobs at any given moment, though you might not know it from yesterday. I teach online, I work for my mom, and I score for ETS. Someone has to pay for those therapies.

I haven't found a sitter who can deal with Joey appropriately. Offers, yes. Actually come and do some sitting? No. And that would also require cash, anyway.

I cannot figure out how these people do it. And meanwhile, what am I doing? Not that my beautiful boys aren't.. well, gorgeous and wonderful; but sometimes I wonder why I have to disappear, when so many others are out there seeming to be moving and shaking and making things happen. Out there organizing and raising money for research and putting out articles and making the world a better place for themselves and for their children- special needs and all.

Bullet said...

Stop being hard on yourself. Reading that post you spent the day looking after and helping your children. Your day was packed, no wonder you didn't have time for anything else.

farmwifetwo said...

The question is "are they??". One thing I've learned in all the years of being online is that a blog post, a comment here or there doesn't give the true picture of someone's life.

Yes, today they managed "this", but what about yesterday?? Did Grandma come and it wasn't mentioned?? Social worker?? Do they have financial resources you don't know about?? Friends that help out? Meltdowns?? Laundry??

Social media is very misleading. I use to get all worked up because I was a failure... just ask the ABA therapists when they left. I wasn't smart enough to do.... only professionals can do... You read about people still in ABA, still in all these therapies and yes I know I should be driving 1hr one way to send the youngest to summer speech camp and the weekend one like I did for his older bro. I did send him a few years back with a teenager. He had a good time but the travel....

Or fork out the $200/mth for 1hr of speech therapy at home - one of the joys of being rural and they include paperwork and driving time in their bill. Quit that too, $200/hr is ridiculous.

I could tell you all about all the things I do or did or the fact my husband is gone a lot btwn the farm and his "extras" so all the parenting/school mtgs etc are up to me. Toss in that I move 2 kids this upcoming year - eldest found a school, youngest... sigh....

Maybe my 10yr old would talk fluently and easily if I did... but it's not worth the misery. I'd rather spend the summer being a Mom and hanging out with the kids. So, I do a little, and live with the fact I could be a superMom and I'm not.

And I don't worry about "those other people".

We've been lucky. I've had great teenagers to babysit on weekends.

Miss Kitty said...

I agree with FarmWifeTwo: Are these other people really doing it all? I doubt it. We're not there with them 24/7, so what we see in a blog post or when we chat with them after group therapy is just one little snapshot of their entire life. And with the social media thing...what do you wanna bet these "do it all" folks are tapping away on their phones to check AssBook and Twatter, but not getting REAL quality time with the people who are right there with them? Sometimes downtime is meant to be just that: downtime. I don't check any social media from my phone because it takes me away from the present moment. My critters and family are much more important than paying attention to some junk that's not happening right here in front of me.

You get a lot more done in one day than I do in a month. I'm impressed. And you're doing a great job raising two kids with some tough challenges--not insurmountable, but enough to make most people give up. Sounds to me like you're doing exactly what you need to be doing. (((hugs)))

P.S. My mom answered your query in the latest Ask Mom post. I think you'll like her suggestions. :-)