A Mommy Blog About Raising Men, Not Boys.

Saturday, September 28, 2013

8 minutes of Autism

Scene, breakfast is on the table. Twin boys are seated at their bench. Yogurt or cereal, sausage, toast, applesauce is the fare. Mom comes in with a cup of coffee and sits down to browse a Martha Stewart magazine.

Start the clock.
8:40 - Charlie is frantically eating. He has not eaten in ten days one might think. He was held captive in a land where no one fed him, from what I can tell. He's aggressively dipping his toast in applesauce, rather flinging his hand as he does it.
8:41 SPLASH cold water on my foot. Charlie has knocked over his water onto the floor because he's being so crazy while he eats.
8:42 Mom is up - grabs a towel, picks up food, picks up Martha Stewart, wipes off cheap table cloth made with red dye that bleeds,
8:43 Mom takes Charlie's cup back to the kitchen, wipes of down and refills with ice and water.
8:43:30 Mom returns to dining room with cup - to find water sluicing across the table like a river rapid. Charlie has now spilled Miles water. Miles has left the table, and is dancing the living room, Charlie has picked up the cup - and apparently spilled it for no reason, or for meanness. Or because God told him to. Unsure on this part.
8:44 Mom frantically grabs towels, grabs dishes, moves items
8:45 Mom grabs Charlie wipes him off - he laughs and hops off to the other room.
8:46 Mom gets more towels and sops off water off the floor, picks up ice cubes
8:47 Mom picks up dishes and starts clearning the table. As she starts running the water to rinse the plates...
8:48 Miles shouts "I need a wipe!" and Mom looks over to see her coffee racing across the red aforementioned table cloth.

And that's why Mommy drinks.

Tuesday, September 24, 2013

Color me Delighted

My oldest child never fails to amaze and awe me. He's sweet. He's smart. He's gentle and patient. He's 1000 things any mother would want in a child. One thing that always surprises me is how much NOT like me he is. He's reserved, calm. Not rowdy. He isn't really even naughty and I've had a mouth like a sailor for years. 

But he's growing and maturing. He's five foot four at age 10. He gets humor that I feel is not only inappropriate - it's way above his head. But beyond that, his tastes and interests develop into his own little person in ways that fascinate me. 

I always knew I'd love him ridiculously beyond reason, since the first moment I laid eyes on his annoyed face. But this weekend, when he and I were up alone and I suggested a movie, he flipped to the On Demand and suggested "Life of Pi". He says "It looks so interesting, I am really curious how the story goes."

He's 10.  Did I mention he's 10? He had the entire uVerse on demand catalog at his fingertips - and this was his choice.

We watched the first half of it, pausing occasionally to explain and discuss the parts he was unsure of. Sometimes to rewatch things he thought were beautiful. I was captivated by him.

This morning in the car rider line he paused prattling on about Lego Chima (I dunno there are lions and crocodiles and they are at war with wolves or something and it's China but it's not China....it's a confusing show to me) and he turns up Landslide on the radio - listens for a moment and says "Oh, it's a cover."

I nearly fell out of the car.

It was a cover. It was the Smashing Pumpkins version. 

I said "You know Landslide?" He said "Well yeah. I just couldn't figure out what song it was, it sounded wrong. But that's a cool cover."

Then he grinned and hopped out of the car.

Look at that. We're not so different after all.

Sunday, September 22, 2013

All The Flavors of Soccer

The oldest boy has played soccer for several years. The girl started this year playing indoor soccer for wee ones, and we decided to move up to the regular outdoor soccer league this fall.

What that means to the twins is, they go a lot and watch their siblings DOING things. I've always felt like that's probably a drag. I mean, they seem to LIKE to go, but what is there to do? Go and watch someone else do something, wow that's probably great year after year.

There are a lot of activities and camps and events for high functioning autism kids. Our group here is really awesome, and I am so glad they are able to provide that. But what about our little guys on the more challenging side? I mean, they like to DO things. Why isn't there ever anything for US to do extra curricular with our Miles and Charlie?

Well it turns out, there is a thing or two. Hats off to Atlanta Fire United for offering TOPSOCCER. It gives Miles and Charlie an opportunity every Sunday to get out there and play just like their siblings.
They spend about half of the time doing various play activities based on the abilities of the kids there. There is a range from little guys to young adult and the volunteers running it do a spectacular job of dividing them up and keeping everyone interested.
We sit on the sidelines and everyone cheers and shouts as they complete their activities, cheering even louder for the kids who need it most, the enthusiasm from the parents is amazing. I think it's partly just being so glad there is a place and event FOR our kids. We range from autism & down syndrome to various physical and mental disabilities that I don't comprehend. It doesn't even matter. They're out there running, sometimes with help, and kicking the ball and scoring. Just like regular kids.
This is the same league Louis plays in, AFU, and so he goes out to help during the practice and game. There are sometimes other older kids from the teams who come and help - they do an amazing job working with the kids, it's really impressive.
I think one of my favorite things is that they do work with them to learn real soccer fundamentals. Sure, it's scaled into bites that they can handle - but I love watching them. 
They also do fun things that give them good work outs and are variously sensory stimulating - like this one, they run with a parachute behind them. The idea is to make it fly. Miles thinks it's HILARIOUS especially when it flies and makes the whipping, flapping noise behind him.
I've heard it mumbled that these things are "for the parents" and I have some thoughts about that. First of all, if it was FOR THE PARENTS, why would that be SO BAD? I mean, as parents, we do have needs. We need to feel like our children are developing. We deserve to have moments that are unique and special - when I said MILES SCORED TWO GOALS his second game, I actually mean MILES SCORED TWO GOALS. 

Louis only ever scored one goal and he's been playing for years, plus that one was accidental and off of his head. So really, would it be so bad if we took them to play soccer just for the much needed parental ego boost? 

You don't get many of those, as special needs parents. You get events that aren't for you, activities that aren't for you, school nights your kids won't understand or also - aren't for you. So the fact that we seek out something THAT IS FOR US so we can participate in the "My kid did XYZ" conversations, would that make us SO BAD? Nope. It wouldn't. 

But the truth is, it isn't for us. Despite Charlie whining because he gets hot and tired, or Miles not wanting to take directions sometimes because he wants a different activity, they're both smiling and laughing by the time we're done each Sunday. They get to run and play and chase a ball. We're outdoors in the sunshine, and there are other little kids. They are kids who don't stare, kids who want to play too. 

It's amazing and it's wonderful. I am so glad we found it.

Sunday, September 15, 2013

Turner Field Killed My Knee

My friend had tickets Friday night and so I was able to go to catch the Braves on a perfect fall night. It was a lot of fun, we had lots of interesting characters around us, crackers in front, hipsters in back, more reserved southern ladies and gentlemen on the side. 

It was a good game despite the Braves losing, and our seats were flawless.
It was only when we left that I started to have a little problem. I'd been pretty good, didn't upset my stomach on junk food and didn't drink at all, so I was feeling - stomach wise- pretty good. It had been my stomach I was paying attention to as it doesn't like a lot of crap food and booze these days. 

As we were leaving, there was an incline on the way to our parking lot. Passing the green lot, I felt that burning strain, like when you've done too many stairs, in my left knee. I slowed my pace a bit and it went away and no worries. 

It was a great evening.

Until I woke up the next morning to go the bathroom, about 6 am. 

And my left knee didn't work.

So yesterday, I spent hobbling around with a cane, taking pain pills and trying not to do anything with my knee.

I missed the Boy Scout Fall Cook Out and the girl's soccer game. I don't MISS FAMILY THINGS.

I am trying to decide if this means I need to work out or just go straight to the Hoveround thing. I saw the commercials - you can even go to the Grand Canyon in those. They're like the tampons of the geriatric product set (you can do anything - camping, hiking, etc....)

So that was my weekend, laid up with a bum effin knee. I hope it impoves today.

Wednesday, September 11, 2013

In Dreams

Something odd happened to me yesterday morning.

I woke up, sitting on the side of my bed, holding my phone. This is pretty bizarre and doesn't happen. I HAVE woken up holding my phone before. Apparently I need to talk to Siri in my sleep.

Yesterday though, I thought it was odd but went about my morning - coffee, kids to school, life, etc. At some point though, I looked at my plurks for the day. (Plurk is a social network you don't use, don't worry about it).

I see this plurk.
"I wanted to go back to sleep. But someone fucked with my alarm time and now I am too tired to do the math on how far off my clock is so I can sort out how long I can sleep."

I had NO memory of writing this. Which seems odd. I thought maybe I woke up, plurked that, then snoozed a bit and woke up AGAIN or something.

Until I got home, and no, my clock was not off some random amount of time, it was off 10 minutes exactly like it's supposed to be.

I was sleep plurking.

I've been a sleep walker forever, and a sleep talker. Julia has inherited this. She woke me up at 4 am to come to her room because Elmo was lost. When I got there, she just stood in the middle of her room and cried. It was 4 am and I was bleary eyed, so I pointed out Elmo is on her sheets and that was good enough. We both went back to sleep.

It keeps things interesting. That's for sure.

Sunday, September 08, 2013

The Allure of The Girl With The Pearl Earring

Yesterday afternoon we traveled into Atlanta to see the High Museum's exhibit of Dutch masters including the amazing Girl with a Pearl Earring. It was SO breathtaking. If you asked me, I'd never choose the works housed in Maritshuis as my favorites, yet standing in front of them I am so awestruck at their brilliance.

The oldest boy is old enough now that I annoy him whispering in his ear all the important details of the paintings, why they are relevant, what to look for. But I can't help but think that some day as an adult with a proper world view, he'll appreciate that once he stood two feet from Girl with a Pearl Earring and looked her in the eyes.

The entire gallery was a feast for my brain. I think I'd hang every one of them in my house and never get tired of soaking up their details. 

We wandered around to another exhibit, specifically one that featured local artists, which was pretty interesting.

Even Julia found things to like.

It's interesting because you wouldn't know if the twins did or didn't like it much, as they usually just putter along with us, but I know it makes an impact on them, they know we go to museums - because on a "What I did this summer" project Miles chose "visit a museum" as one of his answers. 

I think it's just as important for the twins as it is for Lou and Julia, to be exposed to art. 

I love living in a world class city where I can show my children these things, and expose them to so much.

Well, except this. I'm not sure anyone should be exposed to this.

Saturday, September 07, 2013

It Was Poop Side Up !

This is a diary post of my morning. Enjoy.

At 5:17 am I was awoken by the feeling of being watched. Charlie was beside me, whispering "I want." What? No idea. I reached over and felt his diaper - it was soft so no pee, and no smelly yuck. I whispered to him to go to bed. His dad offered him a drink of water, and said the same. He wandered off.

An hour later Miles scooched into my bed, snuggling and pressing his face into my neck until he found his spot and we both drifted off. About 7:30 he whispered to me "Get up." I looked at the clock, and said "No, bedtime."

He wandered off, I feel back asleep.

At 8:30 ish he came back and touched my face and said "Get up." I was fully loaded with vitamin D and a night's sleep, so I said - ok. I noticed Charlie was in Julia's room and Julia was asleep in Charlie's bed, as I wandered into the bathroom. I had four children, so the first thing I do upon waking is hobble to the bathroom cuz, gotta pee.

I'm sitting there, contemplating my morning. It was early. I'd have time to make a nice breakfast, blog, consider how to do my hair today hell maybe look on pinterest for Up Do ideas and then Charlie came bouncing into the bathroom.

Covered in poop.

Nothing gets you of the toilet faster than poop everywhere.

When I say everywhere, I mean all over his shirt and inside of his pajamas and his industrial giant pull up was full to the breaking point, in fact had broken, with a horrible eruption that had occurred. I'm blaming the Taco Bell we had for dinner but really who knows. Autistic kids often have tummy problems and this is someting that does happen with my Charlie sometimes.

The husband was up instantly and he went on poop patrol - seeking out damage and ready to do disinfection in any room that had been desecrated, and I set about scrubbing the child and the clothes clean and getting him changed.

He did the Lysol duty while I scrubbed the inside of the pajama bottoms with alcohol and a baby wipe and I sat them on the side of the tub, then started to move them realizing they were in a bad place.


That's when I started giggling.

Whether or not the inside of my 9 year old's pajamas were laying poop stain side up, was the first conversation I got to have with my husband this morning. I can't tell you why it was funny. It just was.

I washed my hands about 8 times and took the little ones to have breakfast downstairs. I called Charlie in for a HEALTHY dose of Immodium because, we're going to see the Dutch Masters at the HIGH today and I am not having him poop all over the museum.  After he took it, I pointed him to the water cup on the counter and told him to take a drink if he needed one.

When I turned around he was taking all of the water cups, and putting them on the table, in the right places.

"I help," he said.

This was my morning.

Friday, September 06, 2013

The Things You Learn

Most people probably heard the story about the mom of the autistic girl who tried to kill them both, I've been mulling it around in my mind, because of the desperation, depression and absolutely being overwhelmed with your world that the woman wrote about on her blog 

If you aren't a parent of an autistic child, I will never be able to explain it to you in words you understand. In exactly the same way, if you were not a parent, I could NEVER fully get you to understand what it means to be one. I can explain it, and you could think you understood it, but you wouldn't get it. Not really. That isn't because you aren't capable of it, it's because it's meaning isn't visited upon you until it has you in it's grasp - and by then, it has you.

The problem is sometimes, that we write and try to show you the good things. We want you to see how we're coping, and how things are coming along, what our strategies are, our victories. I don't know why. Maybe we want to show you we're doing ok.

My heart breaks reading through her blog. I see someone going LOOK I HAVE A PLAN LOOK I AM DEALING WITH THIS. And she's trying really hard, so super fucking great kudos to her. Because that's awesome. But we also get to be human, we special needs parents. We get to be angry, and we have to know that just like the "typical" parents of this earth, no matter how hard we try our lives are going to go off kilter. We can't plan away our autism, we can't say if we do XYZ everything is going to be better.

Nothing hinges on ONE thing. Not in anyone's life. Right now I have a 9 year old boy in a pullup saying "Did I poop? Did I poop? Did I Poop?" over and over and over. He did not. I am not going to ever let ONE thing define how I proceed. My world is bigger than one failure or one success. My world is multifaceted.

I was thinking, as I'm waiting for the Beta Test of Elder Scrolls Online to download, that being a parent of a special needs child pushes your character in ways you didn't know you could be challenged. It's definitely not all good.

Under the category of NOT GOOD

  • How hard you can cry
  • How lost and alone you can feel
  • How people stare at you and your child
  • How people don't know what to say and are awkward around you when they find out
  • How no one can babysit or will (Emma excluded bcse she is awesome)
  • How you feel guilty even thinking about asking someone to babysit
  • How no one understands
  • How you want to cut the next person who brings up Temple Grandin 
  • How you want to cut the next person who says they are the most brilliant people on earth
  • How people tell you which diet/pill/quack therapy they've done
  • How tired you are of Rain Man
  • How tired you can be
  • How emotionally empty you can feel
  • How disappointed in the world you can be
  • How your dreams can be killed
  • How much guilt you can feel (is this my fault?)
Under the category of GOOD
  • What love is.
  • What joy actually is.
  • How strong you can be.
  • That it's ok to cry. Yes even that hard.
  • Who actually loves and cares about you.
  • That it's not only ok to be selfish sometimes, it's important.
  • That small things can be amazing.
  • That nothing is to be taken for granted.
  • How well you can function tired.
  • That other people actually have it worse than you.
  • How to appreciate what you actually have.
  • That your dreams weren't killed, they were just changed.
  • That you define your own world, and most people don't know that.
I sat in a meeting once, learning about waivers and other government things, and listened to parent talk in desperation about their children, and what would happen to their children when they died. One woman said she had realized she was going to have to simply kill her child, then herself, because no one would take her child when she died. She was in her late 50s, and was completely serious.

This mom in Michigan, who snapped/broke/gave up, wasn't so alone or without resource as that lady. But her desperation was just as real. She made a choice that for whatever reason seemed right. I can't imagine what it was that made it seem right. I had to quit reading her blog, because I see in the retrospect of her words the building desperation and tension, despite the smileys and gifs and GET IT DONE attitude.

When I look at my first list, I remember to look at the second. I want all of my days, and I want my children to have all of theirs. Even on my blackest day, I never walked into that place where such a thing was a good idea. I think I'm lucky.

I think that place lurks for all of us, and we have to find the path to stay out of it. 

Every single day.


Monday, September 02, 2013

I'm Not An American Idol Mom

The oldest boy has a speech impediment. When he was two, it was adorable. When he was three, it was still kind of precious. It was endearing, disarming, and just indicative of his gentle nature, at least I thought so.
When he went to kindergarten, it had gotten better. 

When he started first grade I realized, it wasn't going away. I stood on my head and raised hell until he got into speech therapy. And he's made progress. He's so much clearer now, that you'd probably say he has a slight speech impediment now. R's are his enemy. 

Of course now it's fifth grade and he hates it. He resents losing class time for his speech therapy. He hates going down to where the special kids go, even though he wouldn't say so, let's face it - there's stigma. He wants to be with the NOT SPECIAL kids. 

So on our way to school, he's muttering about stupid speech, and I remind him that he needs it. He disagrees, and starts getting upset to the point of tears that HE DOESN'T NEED IT ANYMORE.

Except, he says he doesn't need it any mo-ah. 

R's. They are still not there, not the way they should be.

So, while I watch one of the loves of my life brought to tears of frustration I take a sip of coffee, and let him know that no, in fact he isn't ok and he needs therapy. I remind him that if he would do his homework for speech aggressively and get this mastered, we could quit, but until then, he'll keep going.

He stares at me blankly, like he can't believe I'm not on his side about this. 

"You know those parents on American Idol? The ones who are VEHEMENT that their baby can sing, but in fact baby is tone deaf, and we all have a good laugh at them?" I ask.

He nods, and wipes away his tears.

"Well, if they had a good mom, who told them the truth rather than what they WANTED to hear, America wouldn't be laughing at them over dinner. Their mom didn't love them enough to say "No baby, you can't sing. You're good at lots of things but not THIS. Does that make sense?"

He agrees, and looks sadly ahead.

"I'm not going to lie to you, Lou. You need speech therapy."

He sits there for a minute, then says "But you think I'm getting better?"

I confirmed that as we turned into the parking lot for school. 

He smiled when he got out of the car. "Ok Mom, Have a great day."

Great. GREAT. Perfect R.

You can do this, kid.