Saturday, March 28, 2015

This April, I want to talk about...

March is ending, and April is beginning. You know what that means. Autism awareness month means lots of posts on all things autism awareness related. There are many examples of why we need this month, but I don't want to talk about Steve Harvey or Kathleen Smith of Tomball, Texas or the "I didn't mean your kid" or their sincere regret that we are so sensitive, that we look for something to be upset about, and that everyone gets offended by something. I don't even want to talk about the stupid ass suggestion that we take the energy directed at [them] and actually put it into our disability because imagine the things we could accomplish for our disability! Partly because it's all been said a million times and I'm tired of repeating myself, partly because there are some bigger/better bloggers dealing with it and I don't have to, but mostly because I have something else I want to talk about.

I want to talk about Jami, the manager at Festus and Crystal City Great Clips who is so patient, so kind, and so lightning quick while cutting Alex's hair.

I want to talk about Matt Gillam, the Assistant Principal at Hillsboro Primary, who's first official interaction with my Goofy One included social stories and role play in their discussion about bus conduct.

I want to talk about Brad Mora, the Principal at Mapaville State School, who's policy is "if he needs it, he will get it." There is nothing in that school that he isn't willing to change, nothing he isn't willing to do to meet his students' needs.

I want to talk about Dr. Link Luttrell, Festus Superintendent, who retweeted the story of the boy who was made to remove his letterman jacket with the hashtag #NotCool.

I want to talk about the Hillsboro McDonald's and Hardee's who have always been willing to do extra for Alex, even though they have no idea he's autistic.

I want to talk about Hillsboro Drug, where no matter what is going on or how the last visit went, they always have a cheerful welcome.

I want to talk about Leslie Payne, the counselor at Hillsboro Elementary, who took time out of her day to talk to me about options for next year. And Rachel Carroll, the Elementary Assistant Principal who knew right off the bat that Goofy would need a special teacher and told me who to request and why- without being asked.

I want to talk about Bonnie Aaron, Assistant Superintendent of the Missouri Schools for the Severely Disabled, who, even though she covers 35 schools, took the time to talk to me about smartboards, gather information, and call me back with suggestions on how to get them.

I want to talk about Becky Ruth, State Representative for District 114.

Becky Ruth is an incredibly kind, approachable, and determined woman. No one will ever know what she did for us, except by my own writing, but she did it anyway because she believed it was right, fair, and necessary.

I contacted her to ask for help getting Alex's school a website. I told her where I'd been and what I was told, I explained that they said it would take an act of legislation. She was determined to fix it, she said, "I WILL get answers on this!" and she did. She made phone calls, she asked questions, she worked hard. Since it was so late in the session, adding a new bill was not an option so she searched for one she could add an amendment to for the State Schools to have websites. Then she contacted the Assistant Commissioner with her request.

The 35 Missouri State Schools for the Severely Disabled, including Alex's school, will each have their own website by the start of the 2015-16 school year.

She didn't leave it at that promise and consider her part done, but followed up. She is getting updates to make sure they fulfill the promise. They have started the process. They have announced their intention to the schools, they have contacted building administrators to ask what they want to see on the site, they are looking at how to add a calendar, they are checking into training staff, they are optimistic that this will be up and running by Fall. She has made sure that I am getting updated as she gets the information.

She didn't do it to get votes, or for publicity because there will be nothing publicly linking her to the sites. No one will know the work she put into making sure our kids and parents have equal access to the same educational tools and resources as their nondisabled peers, no one will know the possibilities she just opened for the schools and for the PTOs of these schools.

Every April, I end up angry over the general public's unwillingness to be aware. This year, these people are the ones I want to see in my newsfeed. These people are the ones who need to be talked about.

Wednesday, March 25, 2015

Time to meet the neighbors.

We've been here for four months. I've been fortunate enough to have only officially met one neighbor- who turned out to be cool, one neighborhood woman who seems to be...knowledgeable about what goes on here, and a young neighborhood couple who are definitely young and entertaining. I haven't even talked to our landlord. No need. Drop the rent in the box and watch for it to clear my bank account.

Yesterday morning, there was a young girl standing in the cold rain, miserable and shivering. I offered her a seat in my van. I was thinking it was a one time thing because of the weather. Turns out she's a very friendly girl who likes to chat. She wanted a ride home. and then a ride to the bus stop. and then a ride home. I'm definitely going to have to meet her parents before someone starts wondering if I'm trying to kidnap the kid. Lord knows we're already getting a reputation for collecting neighborhood cats.

I took her home today and Goofy started pointing out a trailer he was going to visit. I have no clue who lives in this trailer. He calls her "the girl he helped." Based on that description, she could be anywhere from 1-100. As far as I know, there are no kids living there. School age, anyway. There is a mix of people living in this Parc, some disabled, some decent and hard working, some secretive, and some you wouldn't dare knock on the door. The kid has no sense of self preservation. I told him no. I told him he was not going to anyone's house until I met the parents. I told him "because I said so!"

Goofy was out playing with kids while I cleaned up to start supper. Walter came in to tell me that the church van comes down here and Goofy tried to follow the kids into the van. No thought of even telling me he was leaving. The van was here, he was going. Walter stopped him. He said he couldn't believe Goofy would have just left with them and started worrying about how he would leave with just anyone! Yeah. I know.

After supper, I let him go back out for a little bit. The rules are that he can go to the white mailbox to the left, and the start of the horse fence to the right. When I call his name, he steps out to where I can see him to check in. I sent Walter. He called. Once, twice, three times... I saw him leave the porch. He called again. and again. He came back to tell me he couldn't find him. I went out and called. Once, twice... I went left, Walter went right. Nowhere.

I turned around to head Walter's way and saw the neighbor outside. Goofy wasn't there, she sent her daughter to show me a fort he could be in. We started up the street when she turned around and saw Goofy standing almost at the end of the street. We went back toward him, past our trailer, she went into her trailer. Three more trailers, I ran into Walter and pointed to his brother. Two more trailers before we found his bike in a yard. Three more before I got to him. I'm telling you, I don't know how I managed it, but I absolutely did not beat his ass all the way home.

I wanted to, but I didn't. Instead, I spoke as calmly as I could, explaining that I already told him not to go there. We went over the boundaries and the calling rule. I reminded him that he was not allowed to go anywhere without telling me and I didn't want him anywhere that I didn't know the adult in the house. I have to meet the people before he goes. He disagreed. He knows her. It's fine. I'm thinking about buying a leash. Get a 100ft rope and tie his little butt to the front porch. It would at least take more effort on his part to get lost. Maybe it will take him long enough for him to remember to tell me he's leaving.

Tomorrow he's grounded, Friday he's going to his dad's. That will buy me some time before I have to go meet some more neighbors.

Friday, March 20, 2015

Playdate

I cried today. I did not know how emotional a person could get over a phone call from a stranger, but the things she said to me...

Goofy has a friend. Like, a real friend. Someone he really cares about. It started the day we sat down to fill out valentine cards for his class- which we are now able to do in one sitting, with me writing the kids' names and him signing his own, yay!- there was only one kid on the list that he cared about. This kid had to be done first, list be damned. He went through the whole box and searched out the perfect valentine, he named the kid by first and last name like the kid was a real person and not just a name on a list, he addressed the valentine himself and signed it. Let me repeat that- he addressed the valentine himself. He willingly and painstakingly printed the kid's first and last name on the valentine before signing his own name. I need to know more about this kid.

But he wouldn't tell me because his teenage brothers have instilled the "it's not your business, it's mine" and the "mind your own." Which, the second could possibly be my own influence backfiring, but, anyway.

We talked to Goofy's counselor about the special boy and as usual, Goofy was willing to talk to him. He explained why this kid was his friend and the things they had in common. The more I listened, the more the alarm bells went off in my head... not in a bad way, in the way of recognition. Fond description by fond description, boxes were checked in my mind. Like seeks like. It sounds like my Goofy One found a very good friend, one who fits perfectly with him.

My suspicions that the kid wasn't quite like everyone else were confirmed when I went to get Goofy from his lunch table and found his friend rubbing his face on Goofy's arm like a cat and making peculiar sounds at me. I think I like this kid. I need to know more about him.

Third grade is coming fast. There is only one kid that Goofy has connected with, and I mean next to ever. The neighbor girl was the only friend he ever had, and now he only sees her every other weekend. He needs a friend, he chose a friend, and I need to see what I can do about keeping this friend. I called the Elementary and spoke with the counselor and the assistant principal to ask how to request that this boy be in Goofy's class again. I got the information I needed and a whole lot more that I appreciate. They suggested two teachers for next year that have patience, understanding, and experience. I didn't have to mention the classroom environment, they already knew that a well organized and calm classroom would be important. I am comfortable with next year.

Next, I sent the boy's parents a letter and waited all night and day for a response.

I was sitting on the porch with my coffee and grocery list, watching Goofy play and listening to Alex watch his movie, when my phone rang.

Her boy has trouble making friends, too. He tries, but most of the time he prefers to be by himself. When she described his reaction to my letter, I choked up a little. She told me a little about her boy, and how he seems to be a lot like my Goofy one. She told me some of the things they have been working on, and the answers she's trying to find. She told me she gets it. She knows. When she told me yes, she would like to have them in the same class again, and yes, she would like for them to be friends, I cried.

We have our first ever playdate tomorrow at noon.


Friday, March 13, 2015

Unbelievable.

This week has been unbelievable. I'm not even sure which one to talk about so I'm just going to throw it all out there and gather my thoughts another day. Maybe eventually, I'll be able to put together a coherent post that stays on topic. (pfft. I know.)

Anyway, first was some really awesome news on Alex's school website. I called the governor. and was sent somewhere else. so I left a message. and I called a senator. and was sent somewhere else. so I left two messages. No one ever called me back. BUT, Becky Ruth, State Representative for District 114, has a Facebook page! You can find her Facebook page here. Becky Ruth is a retired teacher and all excited about education. I read it on her webpage, here. So, I sent her a message letting her know the problems we've had getting Alex a school website and asked for her help. Great news... she answered my message! She said she was going to Jeff City on Monday and would look into the issue, she said she would get back to me. I'm excited. Especially considering the fact that she is active on her Facebook page, and she does have a webpage that tells about her so she has to know how valuable those resources are for interacting with the people she represents, the same as would be possible for Alex's school to interact with the parents of their students. She's always updating, so she understands how effective and efficient those resources are for getting information out to a group of people. Plus, she received and answered my message a hell of a lot faster on Facebook than a phone call to her office. She seems really nice, I'm hoping she can get something done.

Then we start slipping a little.

Goofy got a new bedroom. He has a space for his sensory area, and a separate space to sleep. Pretty much, it's an enclosed bunk bed, but with his proprioceptive problems and our lack of space... it works for us. Walter's jealous. He wants something, too. He wants a break. I scoffed and told him to get a letter of recommendation from his therapist like Goofy did. I'll be damned if he didn't, so now I'm scrambling to find a babysitter for summer. Oh, Lord, this is an entire blog post on its own. You know there is no one who can watch Alex for the summer? I called the daycares, he needs a 1:1 aide. To get a 1:1 aide, you need funding. I called the Regional Center. To get funding, you need a waiver. The waiver we're applying for has a $12,000 cap. That will cover two hours per day, and nothing else. No grab bars for the shower, no handicap accessible porch, no anything that he needs, just two hours of 1:1 care per day. And, if they are funding 1:1 care, they'd rather do it in the home setting. I called United4Children, they found two daycares in my area that could help, and we're back to the 1:1 aide and funding. I called the school, I called the camps ($625 per week!? That's almost what I make in a month!) I called the insurance to get home health care. The insurance will call me back, but she doesn't think it's looking good. Monday, I have an appointment with his principal to discuss summer school, which is three hours per day for one month. How in the world do they expect us to work when there is next to nothing for childcare? But, if you kid is not a danger to himself or others and does not need a 1:1 aide, I suggest Westbrook Academy in Arnold. I've talked to her several times and if it weren't for Alex being...difficult...I'd choose her. The director is an SLP, and they offer speech therapy and occupational therapy while the kids are there. They have a lot of experience with special needs. Plus, they have a website. because, who doesn't?

We haven't quite hit the bottom, but we're heading in that direction.

Goofy's Superintendent is not as intrigued with the idea of Character Education as I hoped he would be. They stopped Character Education 5 years ago. Figured it was a waste of money, or so he was told. But, no worries. The kids are fine. Everything is fine. The have an alternative behavior program now and they've won silver stars or some crap like that. So, yeah, as I figured, trying for Character Education is a lost cause. My only option is to convince the school that my child is the Spawn of Satan and needs transportation as a related service. You know, if it weren't for his ADHD, he wouldn't be bullied on the bus. He brings it all on himself. Because it has to be his fault in order to be kept safe. Shouldn't be too hard, right?

and right about here, I'm fantasizing about slamming someone's head in a car door.

Then comes early out Thursday with beautiful weather, suitable for riding bikes. Guess who learned to ride with no training wheels!!! GOOFY! He screamed, he yelled, he little-kid-cursed, he cried, he threw the bike and tried his hardest to stomp it into the ground, but in less than an hour, he taught himself to ride a two wheeled bike. He was playing with that bike when Alex's bus pulled up. While I was trying to convince Alex to stop yanking me and trying to make me pick him up and just step down the stairs, Goofy's bike was attacked by a bee. He dropped it in front of the bus and ran, screaming like a girl, to the neighbor's mailbox. I yelled at him to move the bike, he refused, I yelled more, he refused. I dragged Alex and all of the stuff he came home with into the street to get the bike and lug it and him and stuff back to the yard, while yelling at Goofy to come home. He refused. The bus driver went to turn around while I took Alex in. She was on her way back up when Goofy refused to walk home, turned to run... I grabbed his shirt, he "fell" forward, "choking" loudly. I picked his 75lb butt up to carry him home while he kicked and screamed. Then he spent the next half hour or so yelling at me for ruining his life because I embarrassed him in front of his friends. At supper, when he was calmer, we had a more rational discussion. I told him that Alex's bus driver witnessed that entire scene, bus driver trumps friends, and he embarrassed himself carrying on like that. I told him if he kept that up, the neighbor mom wouldn't let her boy play with him. I saw the look on her face, and not that she has any room to be judging since she doesn't seem to even be concerned about buying blinds, but it wasn't good. He promised to behave. I made a mental note to ask his counselor about self injurious behavior...and another later to tattle on him for locking me out of the house.

And then no school Friday. Lord, have mercy.

and that all leads to this very moment. I am sitting here with a glass of Wild Cherry Pepsi and Whipped Crème Vodka. I would like to take this opportunity to raise my glass to ex-husbands who are willing to exercise their visitation rights, even though the asshole refused to petition for custody because he thinks I'm doing just fine.

Laugh or cry.

Sunday, March 8, 2015

Changes..

         Ok, so here lately I have been crabby, resentful, and just MEAN. To be honest, I don't know why but it just happens and I don't mean for it to happen but sometimes I just get irritated and I try to be nice but sometimes it don't work. And I just do stupid stuff, like this morning for example, I got a stick of Beef Jerky and it was spicy. When I say spicy I mean really spicy it even said "Really Freakin' Hot!", I took a bite out of it last night and it was really hot. So being the non-thinking irritating brother I walk up to Goofy and I started talking to him.

"Hey Goofy?"
"Yeah?"
"Do you like Beef Jerky?"
"No, its too spicy"
"Oh no, not this one. Here take a little bite"


       And I give him a bite and I see him chewing and I remember how fast it took to kick in and I tell him to hurry get a drink of water and he looks at me. Not the usual look, not the " Oh my god really?" look. This look was a more of a "Really? Why? I trusted you and you did this to me " look. I felt horrible, so I pointed him to the toilet and told him spit it out ( he was brushing his teeth so we were in the bathroom). He runs to the toilet and spits it out and runs to the sink and turns the sink on and sips water. He is done and he runs to the kitchen to tell mom what I did. She calls me in and asks why I did it and I I'm standing in the kitchen looking her in the eyes, I don't know what to say. I don't have an answer to tell her, I'm standing there in her face not saying anything and she wants an answer. Then she smacks me in the face and knocks me to reality. She didn't physically smack me, she asked me a question that was unexpected and I wasn't prepared for. It smacked me in the face and made me think. She asked, "What happened?, You used to protect your brothers, you used to make sure they didn't get hurt. Now you feed them spicy stuff and make jokes that only YOU think are funny." At that moment I had a flash back of all those memories.





 
 
        Now, I don't know what I was thinking but I guess I had to smart off or something. Mom was fed up, you can tell. So, she said she is just going to ban all hot stuff from the house and my hot sauces were gone. I said I'd rather hide them before I throw them away and she looked at me and gave me the death stare, I knew I messed up. The ps3 and my phone, they are on the table and are not allowed to be touched. She told me to clean my room, I already have. She told me to clean the bathroom, it already is. She told me to clean something so I went off and unloaded the dryer and put my clothes in the washer. Then I went to the living room and looked at the table. Goofy looked at me then looked at his glorious pile of pistachio shells. He looked at me, and I looked at him and before either of us said something mom told him to get a bowl and put them in their. And me still thinking of what she said about how I used to be I continued to clean the living room and then cleaned of the Kitchen counter.
 
 
     Now, we have 3 cats.. wait, I guess you can count the stray we found and brought in. So I guess we have 4 cats, Gilbert( Goofy's cat), Smokey(was thing 2's cat but since we moved its all of ours), Marcus(Moms cat), and Amy(the stray).  You know how there's men of the house? Well, we have a cat of the house too. Gilbert, he is the big cat and isn't afraid of the cats. Smokey, he is the sweet, playful cat. He doesn't meow a lot but when he does you can tell its him. Now, your probably asking what does our cats have to do with this?
 
 
       I was walking through the living room and I herd a meow. It was Smokey I could tell and at first I thought it was him and Gilbert playing around and then I remember mom let them out this morning. And there is this cat that thinks he is all big and bad and he likes to fight every cat he see's. Smokey can wrestle and stuff but he can't fight. And Goofy knows that too and then the meows stop for a second and I hear them again I look at mom and tell her its Smokey and she tells me to go and help him.
 
 
       Now, let me tell you what I'm wearing. I'm in AND1 sweat pants, no shoes or socks, and a short sleeve T-Shirt. It is cold outside and I open the door to step out to see the big and bad cat on top Smokey clawing him with his back feet while he bites Smokey and Smokey is crying and whining as loud as he can and I jump down more then half the steps and to run through the mud in my bare feet and I grab the big and bad cat by its neck and throw him and I go to grab Smokey but he runs under the house.
 
 
      Goofy loves all the cats, and when he see's them get hurt he burst's out crying. I didn't want the sweetest cat in the house to be hurt badly and then see Goofy cry.  When Goofy cry's its hard to see, it hurts to see him cry. Now, him crying about something he wants but he cant get or something along those lines is a different story. I didn't want to see him cry at all.
 
      I run in to go get the flashlight and I run outside with the flashlight to try to see if I can see Smokey at all. Now, no one in this house goes under the trailer because its dirty and there are spider webs and eggs everywhere. But today was a different story, for me at least. I don't even think about it I run under there calling Smokey. I'm half way through and I hear footsteps come down the steps and I hope its not Goofy. Thank goodness it was mom, I ask her for gloves because it is cold and it is concrete and you know how like little pebbles come off of it and stick to your hands and because I have to move stuff to get to him and I don't want to use my bare hands. She gives my gloves and I'm make my way through not caring what I'm going through. I cant see him so I'm just like forget it he will come back hopefully. I crawl out with dirt and mud all over my hands and knees. But it was worth it for this beautiful cat and his relief.
 
 
      I come in to see Goofy watching Raising Hope. I just go to take a shower and I come to this computer and I see mom left her blog up and I was reading one and I couldn't help but smile and I did tear up a little because I remember these pictures and I just take a look at these beautiful kids and I look at how we have grown. The post was called Alex: Regression and well, if you look at us now you can see our changes. Everyone changes at some point, maybe it is personality wise or appearance wise.


 Some of us turned out cooler than others *cough* Alex *cough*
 
 
Some of us turn into samurai rangers
 
 
 some of us are classier
 
 
 
And some of us... Well, We are one of a kind(:
 
 
 
     No matter our changes we are the same. We change, all of us. But even if we change so much we can barely recognize each other ( hopefully it wont happen ) we will still be there for each other. If we are hurt, the other will be there for them. Only our appearances and personality change. But we are family, and family doesn't change ( please no " Well, technically " comments ).
 
     Mom, even though I can be really mean and annoying to my brothers it doesn't mean I don't care for them anymore or I still don't protect them. And I do realize our bond, our brotherly love. I do realize that we will be together till we die. I do realize that the little kid sitting next to me watching Power Rangers is my brother and I should love him and cherish that he is my brother. And I do realize that the little kid in  his room watching Dora is my brother and I will go out of my way to protect him at any cost. I will protect both of them. I love them.



Tuesday, March 3, 2015

No more monkeys jumping on the bed... and other rule changes.

I knew who I was this morning, but I've changed a few times since then. -Alice

I've been having a rough time with my boys. Very rough. I know they've been through a lot with the divorce, my getting a job, moving a new county, and starting a new school. I know it's been hard on them because it's been hard on me. I've been trying to be understanding, to not be too hard on them, to not put too much on them, to make accommodations. I've been trying to go easy on them. No matter what I try, things stay rough. Goofy is angry, Walter is resentful, Alex is jumping on his bed. I just couldn't figure it out.

Our counseling session last week was very revealing. Walter is mad that I am not the parent I used to be. I'm frustrated because I don't know what to do about it, there is nothing I can do. I was a stay at home mom, now I'm not. The kids were my entire world. Now I have to divide my time, manage my schedule, make time to clean house, make time for fun. I can't just blow off all of my responsibilities to micromanage their lives! They have more of what they need, more of what they want, and are asked for less than they ever were. How is it so much harder on all of us?

The counselor suggests that it may be time to re-do visual schedules. To rethink how they are paid. To supervise and follow through. And I'm left thinking about the mom I used to be.

This weekend, I got it.

Walter had an appointment with his psychiatrist Friday, there wasn't much to report. When he takes his meds, they work fine. The psychiatrist reminded me that, as the parent, whether or not he takes his meds is ultimately my responsibility.

We went to Wal-Mart on Friday night, where the Goofy child threw a fit that he wasn't getting paid until the bills were paid and groceries bought. We fought all the way through Wal-Mart. By the time we sat down to supper, I had had enough. One more gripe from the Goofy One had me snapping at both Goofy and Walter, "You want to be paid for something? I suggest you get up off of your ass and earn it. I'm not giving you money." As if I need to hand them cash to pay for the privilege of raising them. I do enough of that with the roof over their heads, the clothes on their backs, the food in their bellies, and the many games and toys that they have.

Sunday, the neighborhood kids worked really hard on a man-sized snowman and am epic bucket fort. The first thing Goofy did when he came home Monday was run and crash into it with the intention of destroying it. He lost his tablet and the PS3 for the night.

Walter refused to answer his phone. 8 times, I called that boy. This is really getting annoying because I need him to have his phone so I can call him, but he's not answering so what good is that doing? *flash of brilliance* Leaving the house together, I held out my hand, "give me your phone." "What? Why?" "Because if you can't answer me, you don't need to answer them. I may not be able to take your phone when I'm gone, but I can take it when I'm with you."

Sitting in White Castle's drive-thru, Goofy remembered that he left The Neverending Story at his dad's house. I quietly praised the Lord, and he flipped the hell out. Next thing I know, Goofy's accusingly asking me why I'm happy. I responded that it's a beautiful day and there's a good song on, then I asked him why he was happy. He said he wasn't happy and that he was very upset that Walter said I was happy that he left his movie. Why Walter has to be an instigator, I don't know. It's one of our current problems. There's a lot of whispered judgments going on lately.  Sneaky, round-about discipline. Things that will tick the Goofy Child off because I don't do well enough. Goofy's banging his head, kicking and punching the back of Alex's seat. He washed Alex's chair after supper.

Tonight there was fighting over video games. Walter and Goofy ended up sitting on the couch, bored out of their minds for the whole time I fixed supper. They cleaned up the living room afterward.

As for Alex jumping on the bed... all I have is a nursery rhyme that he thinks is hilarious.

I did fix the visual schedules to fit our new life. They have to do everything on their list (including meds and chores) to earn $5 per week. Alex is a different story. He gets $5 per week because he asked for it. (Not a democracy. I can make up the rules as I go.)

I really hope Walter enjoys having his old mom back because I'm feeling good about it. I think this might work.