Saturday, June 29, 2013

"Why don't you just..."

Just watch your kids.

Just teach them.

Just whatever.

My initial reaction to reading these words is anger followed closely by smirking at your stupidity. Huh. just watch them... why didn't I think of that!? You're brilliant! I shall start watching them right now! Maybe they just need a spanking. That should teach them. everybody who "knows" says so.

The thing is, it's not that simple. Not watching them, etc... although, that, too... but my reaction. There's this whole autism is autism movement going where all autism is the same and we should not separate out kids by titles such as high functioning/low functioning or mild/moderate/severe autism because.... it's all the same. No. No, it's not. Not saying one is easier than the other because it's not. it's just different.

The problems we have and the way we need to address them are as varied as the spectrum we live with. When it comes to autism, there is no "just..." unless it's "if you don't have anything constructive to add, just shut up." ...on both sides.

Everyone in this community is walking a different path. They may intersect in certain areas, but no two are ever the same. Each person is coming from a different place and having different experiences with varying degrees of difficulty along the way.

Don't assume you know best, that your way is the only way, that you know what someone else is walking because you are walking, too.

Don't assume that just because your kid is high functioning or low functioning that the person you're talking to is, too. and don't assume they're not. You'd be surprised.

Don't assume that because the advice you get doesn't fit your kid, that the person doesn't know what they are talking about or that there isn't someone silently listening who needed exactly that. Their advice comes from their experience, not stupidity.

Don't assume that all parents watch their kids or attempt to teach their kids because, seriously? Pushing a baby out of your vagina doesn't make you a good mom. Not all parents are good ones, not even autism parents (how's that for "special kids for special parents"?) There are parents who don't think to try the basics or to address behavior. There are parents who need to be reminded that "special" does not mean "incapable." I know. because I'm one of them.

Judging someone based on either the question or answer isn't going to do anything but cause drama. I don't know about you but I have enough drama in my life without being pulled into the who has it harder or who doesn't have a clue horse crap. My unsolicited advice... read it and if it doesn't apply to you, move on without commenting. You can't fix stupid, you can't educate willful ignorance, and the rest just isn't worth the headache because it probably doesn't apply to you, anyway.

Friday, June 28, 2013

I'm ok!

It's been several days since I posted so I thought I should let you know I haven't been abducted by aliens or taken hostage by the wild beasts that live here. Nope. nothing bad, nothing big. just the same ol' same ol' kids gone wild. herding cats and such.

I have been a Raging B this week. Partially the curse of being a woman and partially the curse of being a woman with too danged many kids underfoot. ...and in my bed. Underfoot I can handle... in my bed, not so much.

I sleep alone, yeah
With nobody else
I sleep alone, yeah
With nobody else
You know when I sleep alone
I prefer to be by myself

Sleep Deprivation Diaries is my new hero. I don't know how she does it. Her title isn't just some autism stereotype used to be humorous or to exaggerate the pain in the ass part of autism, she is really, truly sleep deprived every. day. since 2 of her 3 kids view sleep as a dirty word. and here I am whining about a single week.

That being said, let's get on with the whining and sweet revenge. 7 1/2 years ago, I kicked Walter and Alex out of my twin sized bed so they wouldn't kill their unborn brother with their mule kicks. Once I got a taste of sleeping alone, I vowed to never sleep with another kid. ever.

I sleep alone, yeah
With nobody else
I sleep alone, yeah
With nobody else
You know when I sleep alone
I prefer to be by myself

Then along came my husband, who plopped the Goofy Child right between us. Don't. do. that. No kids in my bed. ever. You don't even know the trouble you're inviting. Guess who won? Yeah.

6 years later, I get the Goofy One out. mostly. and it's just me and my husband.

The only one who will sleep with me
Is my dear Old Husband
And we sleep alone, yeah
With nobody else
Yeah, you know when I sleep alone
I prefer to be by myself

and then comes the Grandbaby. You can see where this is going, right? "Don't. even. think. it." I say. "No. absolutely not. I sleep alone." We went out and got fuzzy purple girl bedding so she could sleep in her own damned bed. Yeah. guess where that fuzzy purple girl bedding is spending it's nights... mhmm. with tiny feet planted in my back.

We had a couple of nights of that and by the time the girl goes home, I'm pretty cranky and looking forward to a full night's sleep. I get in bed, all comfy in my fresh PJs and freshly made bed and quietly drift off to pure bliss... alone. with just my husband on one side and cat on the other... until I'm rudely yanked back at 1am because Thing2's girlfriend's ride home ditched her. My husband has to be up in 2 hours for work, so I'm cussing a blue streak as I yank on my jacket and shoes and throw Thin2 my keys. 3am, I'm back in bed cursing the need to go to Story Time with the Goofy One's reading trouble and Alex being excited that I told him we were going goodbye to the library in the morning.

That evening, my husband reminds me that the grandbaby is staying the night and doesn't understand why that would upset me, I'm happy to explain. So, when he left for work, he scooted the grandbaby into his spot so she wasn't right up against me. When my alarm went off, she was still sound asleep and so was Alex so I shut the alarm off and went back to sleep... until my husband called. waking her up. and she woke Alex up. Not. funny.

Later, the Good Lord smiled down on me and flashed some good luck my way. I had just gotten off the phone with my husband who gave me an estimated time that he would be home when the doorbell rang. I gave the man selling magazines a time to come back and talk to my husband about it.

When my husband came in from his chat, he shot me an irritated look, "I don't know why you would do that." I smiled at him, "Call me before 8am again."

and then I got a full night's sleep and my husband hasn't called me yet this morning :)



Tuesday, June 25, 2013

Preparing for the First day of school- 7 weeks

I needed to shop for clothes for Alex and the Goofy One. Easy enough since they only need 2 outfits and fashion isn't that big of an issue for them, yet. ...Yet. *sigh*


and I needed to organize my "office" and e-mail accounts. (yes, plural. an ungodly amount of plural.)

The e-mail is fairly easy, I just rename the old school folders with the year and school, delete the ones that won't be needed again, and start a new folder for this year so I can keep track of all home-school communication and have a record.

...as for the "office"?

Defeat.

This one is sooooo hard! Have I mentioned how much I hate paperwork? I need things. filing systems such. I don't even know. I need that lady from neat. yeah, she'd know what to do. something. right now, I have 3 areas where school papers are stored. and yes, it's embarrassing but I'm showing you anyway.

 
You've seen my kitchen space. No big surprise. The scary one is this... *hangs head in shame*


I hate paper. with a passion. but schools love it. and, it's a necessary evil. Gotta have documentation, right? Of what? I don't know. but everyone wants documentation of something. "Pics or it never happened." I need to get this mess under control before they start sending more.

The first thing I did was gather up things in the house that I could use in my space. I want it to feel good, I want it to make me smile, I want to want to spend time there, I want everything I need close at hand. I raided my husband's office and took what I wanted. because it's like that. No, really, he said I could because I was getting my crap out of his office, too.

 
In the school e-mail box, I have all of the kids' contact information.
Principals, Assistant principals, counselors, nurses, teachers, therapists...
you name it, they're there. I'll add more as I get new information.

 
 
Calm down, not their personal accounts. The middle school principal now has a twitter account for the middle school. so does the superintendent. The SSD has a Facebook page, the elementary has a Facebook page for their parent/teacher organization...
 
...Not that I don't check personal accounts for public info as soon as I get a name. I totally do. Sorry, but I have to know I'm not sending my kid out to a van with a predator or off with some crazy person. School staff can be crazy. I know, I have friends. friends that work in schools. and I hear them talk about co-workers. Well, not MY kids' staff but someone's staff. whatever. moving on...  




I totally misspelled coffee. kids' fault and I'm too lazy to fix it.

Alex's stuff is still a mess, I got frustrated and just threw it all in there.
 *sigh*... tomorrow.

 

 
I set up my office to where my husband could use it. He does bills and stuff and set his up to where if anything happened, I could take over easily (well, as easily as a person who can't balance their own checkbook can...) so I returned the favor. I do all schools and doctors. If he had been thrown into it the way my stuff was (see above) he would have been in hell and clueless about what to do so I made sure he has everything he needs in an easy to find, clearly labeled system.




Still to go-

6 weeks- buy backpacks
organize Walter's room
Alex- write introduction to teacher

5 weeks- buy shoes for Thing2 and Walter
organize Goofy's room
Goofy- write introduction to teacher/ packet

4 weeks-  buy shoes Alex and Goofy
Organize Laundry

3 weeks- buy personal supplies, alarm clocks
organize bathrooms

2 weeks- hair cuts Thing 2 and Walter
Start routines

1 week- school supplies
Pack backpacks

0 weeks-  hair cuts Alex and Goofy

Sunday, June 23, 2013

The Goofy Child's Hero

There was a time I worried. I was afraid that this family would never be a family. I worried that this would never work. I worried that the kids would always be split into his and hers and the word "brother" would never be used voluntarily. Thing1 swore that he would do everything in his power to tear our relationship apart, that he would destroy our marriage... and he almost did. but we came back stronger than ever. We worked on us as a couple, provided a united front, and waited for the boys to catch up... for them to believe that no matter what they did or how hard they pushed, neither one of us were going anywhere.

Thing1... Oh, the wars we fought between the ages of 14 and 16. This house was not a happy place during those years. He refused to clean his room, I'd raid it as I cleaned. I'd steal his drugs and alcohol, he'd pit me and his dad against each other in an argument over invading his privacy and respecting his space. He was awesomely talented at getting in trouble, turning it into a parenting battle and then stepping back to enjoy the show completely off the hook. I took his weapons, he took my cigarettes. I donated his dirty laundry for not washing it, he refused to use baby gates, I hid his weights, he stole my fish. He threatened to run away, I started packing his stuff. He drove under the influence, I pushed for rehab. I'd tattle on him for something he couldn't argue, he'd block Facebook on the computer... aw, man, the screaming matches. I don't miss those at all. and then you have the fights between kids and the battles that continued until the day he moved out. Ahhhhh, the good ol' days.

Today, I had an eye opening experience in a conversation with the Goofy One.

Goofy: Can we go somewhere?
Me: No. Thing1's coming home today.
Goofy: wait. which one?
Me: Jr.
Goofy: He's moving back in here?
Me: In this house? No.
Goofy: Then why did you say he's coming home?
Me: because he's been in Tennessee. It's a state far away from here and he's coming back today.
Goofy: Oh, he's coming back to town?
Me: Yes.
Goofy: I want him to move back here. Can he move back here?
Me: No.
Goofy: Why?
Me: Your brother has bad habits I don't want you picking up.
Goofy: *you're stupid look* He won't. He'll just take me to the gas station, like before? and he'll buy me ice cream. and I'll ride in his car. in the front seat. *impish grin* with no car seat.

*conversation continues with car seat law and why you don't kill cops to break out of prison*

and it hit me, looking at my smallest son who looks up to his brother and cherishes their time together so much that he still talks about a trip to the gas station to get a 50 cent ice cream that happened over a year ago.... while I wasn't looking, it happened. Somewhere along the way, my boys became brothers. we became a family. I've got to tell you, it feels good.

If you had asked me just a few years ago if I would ever see the day that I would be glad to realize Thing1 is Goofy's hero, I would have laughed in your face, told you that you were freakin' insane, and hit the whiskey just considering the possibility that this juvenile delinquent would have any influence over my sweet baby.

Looking at this 19 year old man in front of me, seeing how far he has come, how much he has grown up, seeing him not only as a potential role model for his brothers but seeing him step up and take that role seriously and willingly... I am proud. I am proud to say that my oldest is my youngest's hero. I am thrilled to say that my baby wants to be just like his big brother when he grows up.

 
 
 
 
 
 
Looking at the men in his life, I think the Goofy Child has been blessed with plenty
of real life heroes that he can (and does) proudly claim are his brothers...



 
...and his Dad.

 
It was a rough ride, but I realized today that we did it. We created a family for our children.
 

That talk about Alex's Daddy...

Alright. I think it's time to have that talk I told you we would be having about Alex's Daddy back when we did his IEP. I told you....

Some interesting things came up at this conference such as Daddy's sudden desire to take his son out of my house on a regular basis... which is totally going to happen when he pries the kid out of my cold, dead hands and is an entirely separate blog post...

and here is that separate blog post. Not for the purpose of Daddy bashing (although every once in a while I do get in that mood and as much as the man is pissing me off, we might very well be headed in that direction) but because I don't know what to do and I need to talk it out.

Now, the problem is going to sound stupid, I know. but... Alex needs his nails clipped.

Alex's Daddy clips his nails. I text, he comes, nails get clipped. That's his only job. and child support. but that's his own fault for dragging me into court three. times. A woman can only take so much, ya know? at some point she just snaps. and $347/month seemed like a better alternative to ending up on Snapped. (Yes, I'm still sore about it. I hold grudges. it's my superpower.)

so, anyway, Alex's Daddy hasn't taken him for consecutive visits (hit and miss) since I got full custody 6 years ago, never took the full allotted amount of time (every other weekend during school, every other week in the summer) because he pays child support, he shouldn't have to take him for that much time. Fine, whatever. his loss.

Then about 4 and 1/2 years ago, he stopped taking him for full weekends and could only take him one night. Ok. Fine.

About 3 1/2 years ago, he decided he couldn't do overnights anymore and would only take him for a few hours on Sunday. *sigh*

Not long after that it was only special days. *this is getting old*

Then... full stop. *alright, then.*

Recently, he started coming here to see him. *I'm cool with that*

In April, he decides he wants to start taking him again. *the hell you say!*

Then... he and Alex's Mommy break up and... poof! The man is gone. A few weeks ago (month?), I text him. I said, I have something for you (pictures) and Alex needs his nails clipped. Silence. a week later... Alex needs his nails clipped. He's trying to kill me. Silence. *curses*

Alex's Mommy brought the Sister for the Goofy one's birthday party. We were sitting there on the front porch when Daddy called. He's pretty ticked off because he told Mommy he wanted Sister for a while that evening and she wasn't home. Mommy explained that it was Goofy's birthday and if Daddy wanted to come and get her, he could, and added that he could clip Alex's nails while he's here. He refused. and this is the part that has me tripped up... he refused because he wasn't going to come to my house and get Sister when he doesn't take Alex. It's not fair to me. She told him all I wanted was Alex's nails clipped, he stuck to his guns. He's not taking one without the other... as long as I know he's taking the one, I guess.

and here's the funny part... I don't give a crap if he comes to my house or goes to her house or goes wherever to get the Sister, I don't care how often he takes her or how long he keeps her, I just want Alex's nails clipped. that's it. and his guilt? Totally unnecessary. Court order or not, there's no way in hell I am going to hand my kid over to someone who does not know him, does not have a secure place to take him, and has no freaking clue what he's doing with him. Alex stays with me in his home where he's safe- any means necessary. I don't care.

so here are my choices....

  1. try to pin him down and let him know point blank that it will be a cold day in hell before he leaves this driveway with my kid, that I don't trust him with his son, and I would not ever put Alex in that position so he can man up and come clip his kid's nails.
  2. let it go and find someone else to clip Alex's nails (would a school nurse do that?)
  3. suck it up and try to do it myself.... hopefully without taking a finger off. (no, sleeping is not an option. he knows when I walk in his room.)
  4. let him rock his Edward Scissor Hands hands.


any thoughts? I'm still stuck. I think I like the school nurse idea. maybe apply for home health care or something, I bet they clip nails.

Friday, June 21, 2013

Goofy's Pets

I'm sitting at the kitchen table with my coffee and a book. I see the Goofy One run past on his way into the living room. There's only one reason for him to try being sneaky, "BRING IT BACK!" He giggles and stays out of sight for a second. He comes back to the door, both hands raised, "What? I don't have anything." His eyes get wide and he starts dancing, I jump up and run over trying to help him get his pants off while he yells, "AHHHH! he's scratching me!" and I'm yelling, "STOP! Don't step on him!" I yank the Goofy Child up, pull his pants off and set him down well away from them. He's laughing so hard, he can hardly talk, "hahahahaha, he was scratching me like scritch scritch scritch scritch!" I dig through the pants and find the hamster, "Stop putting animals down your pants! One of these times something's going to eat your penis!" "Mom, *sigh* no it won't. You're just saying that."

Lord, have mercy.

This morning, I need to remember that laugh because I'm really not laughing. for real this time. It's too freaking early. let me finish a cup of coffee and that might change. Today, he's not bothering the hamster. well, too much. His pet of the day is the grandbaby.

Last night my husband called wanting to know if I would babysit today. I said yes. I obviously didn't think this through. I knew about the kids get up early thing, my alarm is set for 7:30 every morning, but this is just... crazy!

Again last night they slept in our bed. the grandbaby between us, the Goofy One at our feet and Marcus laying half on top of me, glaring over me at the new thing we put in our bed. I assured the cat that I had nothing to do with it. I told him we bought her her own bedding just so she would not be in our bed. He sent her a stern look and curled up at my side to go to sleep.

At 5 am, the TV started blasting. I kicked at the Goofy One, "Turn it down!" I go back to sleep. 7:15, he's standing beside me, "Mom. Mom. Mom. Hey. I got an ear confection. You need to take me to the doctor. Mom. Mom. Did you hear me?" Yes. I heard you. and so did the baby. She's up. Ok. one sec. just give me one sec. Next thing I know, he's standing on the other side of the gate, trying to convince her to crawl under and she's screaming because she can't get through. we put the gate up so she would wake us up before taking off. She woke us up, alright. Me AND Alex. :/

I let her out and go get a diaper and the Goofy one is trying to lead her places. I take her away to change her and she starts crying- "stop. crying." luckily, that works. I get her diaper changed and Goofy's trying to hand her the hamster. NO! Put it up! She cries. I let her up and check on Alex who's back in bed, go get some coffee and the Goof gave her pizza. She has texture issues but she's cool with the pizza, so I'm grateful. I turn around and they're gone. Gone and silent. F*ck.

He took her outside. I bring her back in, she cries. I get down on her level, "stop crying." she stops. I explain to her that she cannot be outside without an adult. Goof comes in bitching that I took her away and why can't he have anything!? She's not yours. you can't take her outside!!!

The Goofy Child takes off to Lord knows where. My husband calls. checking. apparently, when you are talking to your husband, you should not say, "thank God, my phone's dying. I'll call you back when I get coffee." That is offensive.

I grabbed tube #2 of diaper rash ointment from the baby and set her up with this...


and now, all of Goofy's pets are safe with her sitting behind me, the hamster at my feet, the turtle beside me, the cats smart enough to run... I am drinking my coffee and if all goes well, I might even crush some candy. and then I will call my husband back and be nice.

Thursday, June 20, 2013

A day in the life...

I'm sitting here trying to decide if I am going to publish the post from yesterday but I'm still not sure and I have something even better to tell you about anyway. Heathens. feral children. Rosemary's Babies. The Goofy child is off his meds. I told you this. Well, I decided we were going to story time anyway. Shenanigans. The Goofy one was all over the place. rolling here, dancing there. the usual. I was sitting by Alex when I noticed the inside of his right ear was red. We get out o the library and I make phone calls. Alex has a doctor's appointment in an hour. great. awesome. I tried to get a babysitter because I really did not want to take the Goofy One with me. It didn't happen.

We get to the new doctor's office (new office, same lovely man) and it's amazing. I love it. no dark stairwell. Alex can use his stroller, he loves his stroller, it keeps him calm. We walk in, walk back to get weighed and I help Alex step on the scale. This is one of those fancy scales where you have to stand still for so long and then it beeps when it gets the true weight? Yeah, Alex rocks. Well, he rocks as in he's awesome, but he also rocks. No standing still. it took forever and I was focused on him so I didn't notice when the Goofy One grabbed his stroller and took off running down the hall. until he started screaming that he was running down the hall with the stroller.

By the time we get into the room, I'm pretty frustrated with the Goofy One. I'm answering the normal doctor's visit questions while asking him to stop it, get down, don't touch that, don't stand on their furniture, get down, don't. You don't ring their decorations like a doorbell, inside voice, quiet down, get out of the window, I swear if you lick that... Then the nurse had to get vitals. and she's putting the stethoscope too high on Alex's chest. as in, too close to his mouth. Alex, don't lick her. You can't lick strangers, buddy. Don't lick her. get your mouth off. Luckily, she had a pretty good sense of humor.

When it came time for her to leave the room, she decided to take the Goofy one with her to look for stickers. I'm nervous but grateful. I did warn her that he runs off but not the warning that I've already lost him several times in the past 2 hours. I wanted her to pay attention, not change her mind ;) That trip didn't last long enough, lol, he was back in time for the exam.

The doctor is great. I love him. Alex does not have an ear infection, thank God. and that's probably not some weird, dangerous bug bite on his finger, it looks like another place that's healing from falling on the treadmill. He'll have to look up what the wandering dx in the DSM does but he's pretty sure there's no cure for wandering. When the Goofy one gets his reading screening in August, I need to take the results to him and we'll figure out what to do. 10 minutes. 10 minutes and all of my questions are answered, my kid is fine, and I'm getting the Goofy Child out of there before he knocks the building down or something. I cannot stress how much I love that man.

We came home and I put Alex in his room for a break so he could be alone with nobody talking to him, nobody touching him or telling him to do things. I went to smoke and came back to start cleaning up and saw an empty hamster cage. "Where is the hamster!?" Goofy hollars back, "He's in my room!" Uhg. I crawled his room, the hall, the bathroom, the kitchen, the entry way, the living room... nothing. I go to Alex's room and he sees the best horsey ride ever. still no hamster. The boys found him in my room.

The first fight this morning? I hear two sets of feet pounding up the stairs, Walter shouting threats and Goofy laughing, "It's an action figure!" They hit the top of the stairs and I see Goofy with the hamster, holding him as high as he can in one hand, as if Walter's not taller than he is, with Walter hot on his heels screaming at Goofy to give it back! They see me and Goofy comes running, Walter cries, "MOM! He's putting him in the holes in the pool table!" I am not laughing. so not laughing. well, maybe a little ;)

Wednesday, June 19, 2013

Preparing the First day of school- 8 weeks

Sounds like a long time right? Not really. You know my needs for plans, right? knowing exactly what will happen when and what needs to be done where? and lists for plans? and lists of my lists? Well, this year, I'm not hiding my neurotic tendencies. You're welcome to hop on board the crazy train and enjoy the ride. I got the green light yesterday from my husband to go ahead and get started on preparing for school... and when he saw the total for what I bought, I thought the man would have a freakin' stroke or something. I think he pictured getting a lot more for the limit he gave me- and let me tell you right now, I am not buying some outrageously expensive underwear... well, you know, they are outrageously expensive but they are also Wal-Mart underwear.

I don't have the money, the time, or the brain power to do everything at the last minute. I have to break it up.

8 weeks.

School shopping- We bought socks and underwear all around, and clothes for T2/Walter. I only get 2 outfits per kid to start school in because they have some other clothes they can mix in. Unless they have outgrown everything, they don't need a whole new wardrobe. These 2 boys are pretty easy because they are very limited in what they wear. You know those plain white undershirts? Yeah, those. (except this year, T2 wanted colored ones) and basketball shorts. Simple. Now, I still need to get them each a hoody but that can wait until after school starts.

Organization- entryway. I can do this this early in the summer because there's not much to do, nothing changes. The things that are here, stay here, it pretty much stays straight because everyone knows where everything is and where everything goes- right down to the smallest child.

This is where all of the backpacks, shoes and jackets go... as well as diaper bags, diapers, wipes, ointments, mail, and whatever else we need coming in and out the front door or very frequently. Our set up may not be the most attractive, but it's the most convenient for us. For me, convenience wins.

The only thing I needed to do is clear out, switch out, and take inventory of backpacks. Alex is getting Walter's because it has a single strap that Walter hates and I think might be perfect for Alex. Goofy is getting Alex's because Alex's use of backpacks is pretty light, just a binder and the occasional clothes, snacks, diapers/wipes. Thing2 and Walter will be getting new backpacks.







I'm also working on schedules/ routines/ chore lists this week and have the rough drafts done. Thing2 doesn't have one. He's an adult, if he can't figure crap out for himself, he's in for a rough life. As for the other 2, I'm lazy and I have a feeling that this year is not going to be a sober one. Sorry, but it's true. I love my kids but ADHD and homework don't mix. Then you add in reading trouble... Oh, Lord, I need a drink just thinking about it. I am not the most patient person. at all. so, anyway, I need to lighten my load as much as possible to offset the rest of the upcoming shitstorm.

Walter

Make your bed- if there's too much crap on it, I guess you didn't clean your room, did you? 
Get dressed. Put your clothes IN the hamper. 
Brush your freaking teeth. Girls don't like kissing dirty mouths. 


Do your homework. or be grounded when report cards come in- your choice. 
Practice your trumpet. 30 minutes. 
Put your stuff by the door. I'm not bringing it to you tomorrow when you forget it.


Supper. yes, I expect you to be here. 
Chores-
  • Take the trash out. You live here, too. act like it.
  • Gather the laundry and take it to the laundry room. Don't you wish you had put your laundry IN the hamper? Sort it. Figure it out, there's a pattern.
  • Clean the bathroom. Don't you wish you had wiped the sink after you brushed your teeth? and yeah, that's gross. Learn to aim.
  • Clean your room. If you don't love it enough to take care of it, you don't love it enough to keep it. My room is not up for discussion, so shush it.



Take a shower. Girls don't like boys who smell funny, either.  
Brush your freaking teeth. Yes, again.  
Put your dirty clothes IN the hamper (see: chores) 
Lay your clothes out for tomorrow. I'm not arguing about why we can't do a load of laundry before school. Do it tonight or go without.

Love you,
Mom.









I made a list of everything else that needs to be done before school starts and broke it down into weekly tasks.

7 weeks- buy Alex/ Goofy clothes
organize my "office", e-mail

6 weeks- buy backpacks
organize Walter's room
Alex- write introduction to teacher

5 weeks- buy shoes for Thing2 and Walter
organize Goofy's room
Goofy- write introduction to teacher/ packet

4 weeks-  buy shoes Alex and Goofy
Organize Laundry

3 weeks- buy personal supplies, alarm clocks
organize bathroom

2 weeks- hair cuts Thing 2 and Walter
Start routines

1 week- school supplies
Pack backpacks

0 weeks-  hair cuts Alex and Goofy

And that's our start. Do you have any ideas to add? How do you go about getting ready without losing your mind?

Saturday, June 15, 2013

Alex has autism. Not diabetes or cancer or AIDS.

I did it again. I went looking at something I should have stayed away from. There was a disagreement over this...

"It is estimated that one in every *88 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined."


which is not just from one person, it's all freakin over the place. I've seen it online, I heard it on TV, people tell me... it's everywhere.

I can see both sides of this. kinda. Well, I can see the intent. On one side, you have this from a self-advocate-

"Seriously, please stop comparing autism to things like cancer, and aids. It does not help the perception of the public in accepting us, and seeing us as capable being who are equal, and it is not a childhood disorder, as so often portrayed. Autistic kids grow up to be autistic adults, and we have to live with the stigma you put out there about us."

and on the other, you have this from the person who thought the self-advocate was talking about her, specifically, instead of the offensiveness of the comparison in general-


"Comparison is used to illustrate the magnitude of a situation does NOT imply equality between the two. Very simply put, 1 grapefruit is bigger than 12 cherries. does that make a grapefruit a cherry? NO but gives most people (especially unfamiliar) a visual of how big a grapefruit is. comparison is valid and a way to raise mainstream awareness by putting autism into perspective as it relates to other that require public awareness and assistance."

I can see- sort of- how you might get an idea of size comparison... but not really. 12 cherries does not tell me how big a grapefruit is when I don't know the size of the cherries.

1/88 kids are diagnosed with autism.

1/10 children are diagnosed ADHD.

1/20 children have Sensory Processing Disorder.

1/20 have epilepsy.

The numbers tell me that in a kindergarten class of 30, 1 kid of 3 classes will be ASD, 3 kids per class will be ADHD, 1.5 will have SPD, and 1.5 will be epileptic. I don't know how many will have diabetes, cancer, or AIDS. Telling me more kids in this class have ASD than all 3 of the last combined tells me nothing of how many have ASD.

The other part of this that bothers me? Remember my favorite game? mhmm... here we go... Three of these things belong together, three of these things are kind of the same...

AIDS
 
CANCER
 
DIABETES
 
AUTISM

Three of these things have a mortality rate directly connected to the diagnosis. Three of these things imply the loss of a child. Three of these things are classified diseases. Apples and oranges- or grapefruit and cherries- may all be fruit but...
Disease is often used in a general sense when referring to conditions affecting a physical system (eg, cardiovascular disease) or a part of the body (eg, diseases of the foot).

disorder is less restrictive: Merriam-Webster’s defines it simply as “an abnormal physical or mental condition,”
You aren't comparing grapefruit and cherries, more like grapefruit and brussel sprouts. What comparison is there?



This comparison, as well as hearing that someone would rather their child have diabetes than autism, takes me back to the unthinking and callous comment, "his mind might not be there but he's still a growing boy." It hurts.

Autism is not a death sentence.

Autism is not a loss of life.

Autism is not emptiness. nothingness.

If you think that, you don't know my son.

Alex is an 11 year old boy with severe autism. He's non-verbal, illiterate, developmentally a toddler, dependent on me to meet all of his needs... and absolutely perfect.

Now, don't get me wrong, he's not perfect as in has no faults at all, he is perfect faults and all. He is fully human. He is a whole person.

He's sweet and loving- the boy knows how to let you know you're loved. He can head butt you one minute and kiss you the next. and, oh, how he loves to dance. He's just as moved to move by current country as he is Nirvana, Pink, and The Ants Go Marching. He loves dogs but couldn't care less about cats. His favorite shows are Dora and Sesame Street and he loves to sneak into his brother's bed to watch out the front window. He's got a laugh like you wouldn't believe and a cry that will motivate you quicker than anything. He loves to watch water swirl around his feet but hates stepping down into water. He loves his brothers... his sister drives him crazy. He's very stingy with his toys. He likes for me to read to him, the most recent book- You Are Brave- he insisted I read it 3 times and then look through it again to see the pictures. He knocks in threes. He speaks in threes. He loves the number three as much as I do. He loves baby dolls- but only the black ones. He loves babies but doesn't want them touching him. He hates the slide but he loves to run. When he looks at me, his eyes tell me all I need to know.

He is not empty.

He is not lost.

He's right there, you just have to look.

No, I would not trade his autism for cancer or diabetes or AIDS.

Alex is Alex and I like him just so. He is happy and healthy and that is all that matters.



video

Friday, June 14, 2013

I lost my path...

I have a problem and I'm not sure where to start. This past month has been hard. very hard. School let out and the world spun out of control.

Alex was not happy about the change and was determined to make sure I knew that. He bolted, he threw things, he angry stimmed.... for weeks the boy was hell on wheels. He finally settled down just in time for the Goofy one to get started.

We're having a problem with Medicaid. Goofy was adopted a while back which meant my husband could put him on his insurance, which made Medicaid a secondary insurance. Things got messed up. They are fixing them but right now the Goofy one doesn't have Medicaid and we can't afford the co-pay on his medication which means the Goofy one is running out the front door, dancing on the porch I'm sexy and I know it style in his underwear, laughing his maniacal laugh then screaming like he's afraid for his life when I try to drag him back in the house. He's jumping on furniture like he really is the Red Ranger or maybe even Spiderman, even though I have never seen him glance once at anything Spiderman related, his gravity defying parkour like acrobatics reek of that radioactive-spider bitten freak.

Which combined with Walter "forgetting" his medicine and the crazy-wild neighbor boy hanging out over here with their running through the house and chasing each other all over the neighborhood, chasing each other through the house locking doors behind them, etc, etc... led to last night's argument with my husband. Thing2 told my husband the couch was broke. Like, really broke. I'm hanging my head, just waiting because I know exactly where this is going. My husband wants me to come look at it. I heard. it's broke. I don't need to look, I believe you. No, no, I had to look. fine. I looked. What do you want me to do? Stupid question. He wants me to watch the kids. I'm not even getting dragged into that so, "I've got candy to crush! and now you want me to actually watch the kids!? ain't nobody got time fo dat!" Wrong thing to say. Shit got real.

Then there was the argument over Thing2 getting one of those iphones. With internet. Are you insane!? School starts in about 8 weeks and you want to add another bill? are you crazy!? So then we get into the yearly argument about when to start school shopping. He's surprised I'm not arguing for Christmas already. No, smartass, that will be in August. but now, we need 4 hair cuts, 4 pairs of shoes, 2 backpacks- and one has to be a sturdy (expensive) backpack, 4 socks, 3 underwear, 8 outfits, extra wipes, extra diapers, snacks... and then there are school supplies! We can't do more bills, we have to get started on school stuff! After my rant, we struck a deal. Thing2 gets the iphone, I get lay-a-way. I'm cool with that.

and, can't forget the blogging problems. Not only am I getting riled by irritating topics ('cuz you know they're only talking about that crap to ruin my day, not because they have a valid reason to write), my blog domain gets all messed up. I don't know if any of you have tried to google me lately, but you won't find me at homestyle-mama.com because I no longer own it. there were things that happened and resulted in my domain being put up for auction- and bid on by someone else- so I had to start all over and then I'll start all over again Monday with my new domain, homestylemama.com.

All of this lead up to today when I looked at my computer, yet again, and wanted nothing to do with it, yet again. I don't want to see what others are posting, I don't want to share my troubles, I don't want to deal with any of it. I don't want to be in groups, I don't want to be on pages, I don't want to blog. I just want to walk away. I wonder if it's worth the trouble. I wonder why I ever started. I wonder if now is a good time to just quit. Maybe losing my domain was a sign from God. I told you guys I wouldn't be on as much during the summer but, truth is, I just don't want to be. I don't need the stress of the online world, I have enough in my real life. I don't want to do this anymore.

I talked to my friend. She said she didn't have anything she could say about blogging except a post she recently wrote, Writing and life, not necessarily in that order, which I missed because I've been hiding and wallowing in self-pity over losing my passion for the thing I am most passionate about. She made me cry. She reminded me. She reminded me of why I started, why I do what I do, why I love it, and that I do have many, many friends to help me through the hard times. She reminded me that there are people who care, people who want to hear what I have to say, people who are helped just by knowing that our crazy lives aren't so abnormal. So, thank you, C, for helping me find my purpose again, and for telling me it's worth reading. I love you, Lady, more than you could even know. and thank you all for sticking with me.

Wednesday, June 12, 2013

It is not ok to kill your kids.

I can't believe I just had to say that.

Alex Spourdalakis is dead. He was stabbed by his mother.

You would think it's obvious that the mother did something wrong.

You would think.

Or so I thought.

That poor woman, she had it so rough. If she had just gotten the help she asked for (and refused). If there had been more services available. She's been through so much. She's tried so hard. If he just hadn't been so damned BAD, she wouldn't have HAD to kill him. He was such a burden, she had no choice. She did him a favor. She freed him from his autism. Oh, Dorothy, we are so sorry you had to go through that.

Are you fucking kidding me!?

She murdered her son and you blame the victim?

Oh, but, wait... he was autistic. That changes everything.  "...the word special after all makes discrimination okay."

No.

Alex is dead. That is not ok. Not understandable. Not a blessing for him.

It is not his fault.

As Alex lay in his bed, Dorothy got a knife. The woman who was supposed to protect him with her own life, the woman who was supposed to love him unconditionally and put his needs above her own violated every aspect of being a mother. She stabbed him four times in the chest. She slit his wrists. After she stole his life, she washed the knife and put it away. She popped some pills and lay back to wait for help knowing it was too late for her son.

Fuck you, Dorothy. I don't feel sorry for you. I don't sympathize. You will never get an ounce of pity from me.

It is not ok to kill your kids.

It is not ok to blame the victim.

Saturday, June 8, 2013

Alex Goes to the Pool

I told you Alex was going to the pool, I told you he was terrified because he keeps falling in, I asked for tips. Natalie suggested letting him wear his glasses in the pool because she has really bad eyesight and the pool looked a lot deeper than it actually was when she was little. I read that and said to myself... you dumbass! No wonder he keeps falling in! He can't freakin' see! So, I made a note to make sure I grabbed his glasses. We bought a swimming diaper, we bought swimming shoes, we packed squeezy toys.

I checked, double checked, triple checked the things I packed trying to be sure I had everything but my checking and double checking and triple checking and then asking for help going through my list annoys the heck out of my husband so we left without the fresh pair of eyes... and Alex's glasses.

We get to Riverchase and on the way to the pool, Alex kicks his shoe off. We go to put swimming diapers on him and the grandbaby and I start putting Alex's shoe back on when my husband tells me he doesn't think shoes are allowed. No glasses, no shoes, in a pool. This is not starting out well.

When we made plans to go, my husband said it starts shallow and gradually gets deep, definitely not like a regular swimming pool. more like a river. no, not so much. maybe outside. not inside. and it was too cold to be outside. Inside, it starts with about a 12 inch drop into about 6 inches of water. That is not like a river. and Alex is very offended. he wants nothing to do with it. I got him sitting on the edge with our feet in the water and he still wasn't happy. we tried to walk around in the water and he hated it. He whined, he cried. He wanted goodbye and he wanted goodbye right freaking now.

I sat there beside him, sitting on the edge of the pool with our feet in the water and I wondered... what the hell was I thinking!? He HATES the pool! Why would I put him through this? What is so f*cking important that I would torment him like this? so he can go on Friday Field Trips to a place he doesn't want to go? a place that frightens him? What is the big deal that I needed to make him do this? I respect my fears but make him face his... what kind of mother am I? Why would I think this was ok?

I sighed and took him for a walk... where we saw the ramp. yes, a ramp. with handrails. and walls. I remembered reading in Alex's report card that "He does great walking when he is in close proximity to the wall." hmmm.... We walked to the ramp with the rail and the wall and I let go. I stepped back. I waited to see what he would do.

He walked up to the water and kicked it. He looked at the water. he kicked it again. he stepped in and kicked the water. he stepped out. he walked in to his knees. he walked out. he ran in and fell before I could catch him, splashing water in his face. I helped him up and wiped his face. He walked out. He walked in up to his knees. walked out. walked to his knees. walked out. walked in to his chest. He held on to the rail and jumped... jumpy-jumpy-jumpy... He smiled. He laughed. He splashed and jumped and paced.... He LOVED IT!

Wednesday, June 5, 2013

I made a deal with the devil-child.

Sold my soul for the written word. or, if not my soul, at least my obstinacy.

Remember the post I wrote about Walter being grounded for the summer and how horrible I felt about it? no, really, I felt horrible. When I threw down, I was assuming that the fact that I had a pretty damned near flawless history of follow through backing my bluff would be enough for the boy to turn his freaking work in... but then it wasn't and he didn't turn his freaking work in and ended up with a D. Grounding him for 6 week periods to where he will sit his butt down and do his work, I have no problem with that. none. boy knew, boy chose for himself. Same with summer but summer isn't just 6 weeks worth of school nights, summer is a magical time that lasts an eternity. Well, maybe not an eternity, but closer to an eternity than an average of 3 hours/day, 5 days/week.

So, I felt horrible. I knew the punishment was extreme but I couldn't take it back. You say what you mean and you do what you say. always. That's what makes you trustworthy. If they can't trust you to keep you word... see? There's the problem. I need my kids to be able to trust me. always. I need them to know that I don't back down. ever.

There was a comment left on that post...

 "...is there summer school in your area? Could he earn freedom for part of the summer by doing the course in summer school? The work still has to be done, he still has consequences, but a chance to salvage some of his summer. ..."


Now, first of all... If summer school was a good idea, a viable option for any of these heathens, I would have signed them up without a second thought. But it's not.

and second... No. That's not what I said. I have to do what I said. I said no summer.

...but then... I think... they also need to know I am fair. and this is not fair. This comment weighed on my mind making me feel that there was something there that I could do to right a wrong. Walter did wrong. Walter knew the deal, Walter made a decision... a stupid decision, yes... but there are other things I need to take into consideration. Like the fact that Walter is a damned good boy. He hasn't been banned from the mall for either stealing or breaking into employee-only areas to make out with a girl, he hasn't vandalized any apartments or set a park on fire, he hasn't threatened other students with sharp objects on school property, he's sober, he hasn't stolen his parents' car, he's not laying in streets playing chicken with cars, he's not running away from home, he's not trying to break into cars, not stealing from the gas station, he hasn't even had a detention (ever) much less been suspended or expelled, he's not getting into fist fights or knocking books out of other kids' hands, he hasn't been brought home by the police and the police haven't shown up looking for him... he got a D in science. based on what I know from other boys his age in this area (including his brothers)... he is doing well enough that an entire summer for something like a D is just.... absurd!

but I can't go back on my word. So I'm stuck.

This morning, I'm going around doing my thing, getting ready for story time and it hits me. PERFECT!!!

"Walter," I say, "what would you think of joining the summer reading club?" Now, the answer doesn't surprise me because he's been telling me no since I first mentioned it. "But, what if you could have your freedom this summer?" "What?" Now I have his attention. It may not be science but reading is definitely not a preferred activity and it is a skill that I feel is important to nurture and it falls right in line with the transgression.

"I want you to join the summer reading club. I want your Wednesdays, and I want your nights. What do you think?"

"YES!!!! Yes, please, can you sign me up?" Yes. Yes, I can. I love you, too, buddy.

Tuesday, June 4, 2013

Dear Husband,

I love you.

Yes, the house is a mess.

Yes, I did do something today.

Yes, that is the same mess that was there last night.

Yes, I do plan on doing something.

Yes, the house will be clean...

...in August. Right now, we have more important things to do.

Monday, June 3, 2013

Freedom Isn't Free: Walter's Lesson.

Poor Walter. I feel so bad for him. Summer is supposed to be a big thing when you are a kid. A celebration of freedom. Hanging with your friends, riding bikes, camping out in the back yard, running through the woods, splashing in creeks... The summers of your early teen years are even more so because this is probably the most freedom, innocent freedom, you will ever have in your life.

Walter looked at that freedom, he stood there and admired it laying before him, this beautiful world of frolicking in the sunshine, and he wanted it. he salivated over it. He started walking toward it, ready to revel in it... until 4 words yanked him back into place, snapping the unbreakable chain of parental control around him.

"Missing and Incomplete Work"

Walter's report card came in. D in Science. again. because of his lack of effort. again. He knew the deal, C or above or you are grounded until the next report card. That has been the deal all year, he's spent most of the year grounded to mom Mon-Fri and without a cell phone Mon-Fri until after supper. He knew the conditions, he knew the consequences, he knew his mother and still...

Walter made the decision to not work for what he wanted.

We talked the other day about rewards? About working to earn things? Walter works for his freedom and his cell phone. He has to earn it. He has chores and school work. A D with effort, I could have accepted. A D because he chose not to work comes with consequences. The consequence of not earning your reward.

I've had people tell me maybe when mommy gets a bit older, she won't be quite so strict. It's not the first that it's been insinuated that I'm childish and petty, usually people are a bit more direct but here's the thing... my kid. I don't need approval, I don't share my stories for people to fawn over me or to collect Yes-Men. and yet, the ones who disagree... thank you, but most likely, your opinion won't change my certainty that I am doing the right thing here.

Walter, my sweet boy, I know you read most every post so this is what I want you to remember... Some day, you will be grateful. You will be thankful because you will know that I love you enough to care and you will have no doubts that I believe in you. You, sir, have great potential. You are capable of unimaginable things. You are amazing. I don't want perfection, I want your effort, baby. You will never succeed until you try. Just try, and I guarantee you will amaze yourself with what you can do.

Sunday, June 2, 2013

Finding the balance between Alex and Me. Or, Epic Parenting Fails.

With summer being here, my alone time is gone. I'm never alone anymore, never without Alex. This means if I want to do what I want to do, if I want to make sure my needs are met, I need to find a new way to do it. I've been trying to live my life with Alex instead of around him.

My life, as a woman.

We've worked on our life as a family. We've been taking him new places, trying new things, and including him in our shenanigans for quite some time now with what I think is major success. My fear of losing him, my fear of him getting hurt... my fear is not ruling our life anymore. We've worked on rivers and Alex is comfortable walking in to his knees and sitting down. I even got him in to his chest once. This year we are trying the pool again. Next weekend.

 I figured with the progress we've made with family activities, the progress Alex has made over the years, it was time to start working on me. what I want, what I need. To balance our needs. To make sure we both get the things we need.

I get computer time easily. Being blessed (in some ways) with ADHD, I can easily divide my attention between kids/computer/housework and (mostly) do ok with all of it. So, I thought I could try a book. Not during a sensory break, not nap time, not after he was in bed... just sit in a chair where I could see the front door, let the kid play and just read. It worked. It was great. He did what he wanted to do, I did what I wanted to do... everyone survived. (serious. survival was the goal.)

Now, I can work on the computer, I can read a book, and (with forfeiting all privacy and any sense of modesty I may have started out with,) I cut the time I need a babysitter to shower down to less than 10 minutes so I can work it with his sensory breaks and ask the Goofy one to watch the door (I know. you got a better idea?). If I can do all of that... there's no reason I can't walk!!!

We have a treadmill so I can walk whenever I get the chance- day or night, rain or shine, 10 minutes, 30 minutes... whatever I can get. ...and I thought to myself, this is brilliant! absolutely fantastic! The best idea I've had yet!

The treadmill is in the living room.

There is a gate on the living room.

There is a TV in the living room.

Dora is on.

I lured him into the living room with the sounds of Dora. I locked the gate behind him. I watched him stim his dance... The stars aligned, the angels sang, and I knew... This was going to be EPIC!

Except... I get lost in the music, the movement, everything else disappears. like it did this time. until Alex tackled me. and we fell. by the time the treadmill stopped....



Yeah. Epic Fail. Poor little guy. :(

That won't be happening again. I think maybe I should use a little more common sense in my big dreams.

There will be a day (quite soon, the way time flies) that it will be just me and Alex. All day, every day. Then what?