Friday, October 16, 2015

Mac for President!

I keep saying I'm coming back, but then I never do. I'm not saying it this time. This time I am going to say that my years of blogging and running a Facebook page have been an incredible help in what I am doing now. I have something new going on. I am the President of Mapaville School's PTO, I may have already told you that, but I haven't told you what that means in my life.


Mapaville School is a school for the severely disabled, located in Jefferson county. We serve 11 school districts. Of the 11 school districts, some with student populations of 11,000+ and some with thousands less, we have 37 of their students. There are many reasons for this including parents not knowing Mapaville exists, the confusion on LRE, and the fact that the Abuse Scandal of 2008 is still haunting our school. Of the students who were there in 2008 and are still enrolled due to the lack of placement options, the parents have a general distrust of school staff. The school has been trying for transparency to the best of their ability, working within the strict confines of State (MSSD) policies (that I still have not seen in writing), but there is trouble with communication and parent involvement.

That's where the PTO comes in. Our Bylaws list our objectives as: to promote the general welfare of the students of Mapaville State School; to advocate and secure adequate laws for the care and protection of severely disabled youth; to raise the standards of home life; to promote cooperation between parents/guardians and teachers in formulating an appropriate educational program for each child; and to develop an understanding between parents, guardians, educators, and the general public of how disabled youth can function to the best of their ability within the community.

For those of you who know me, and have followed me for any amount of time, you know my passion and you know this is right up my alley. This is what I want to do. This is where I can make a difference. However, there is an added complication. Of course. The PTO has been "on hospice" for years. The way I got the job was at the last PTO meeting of last year. The President of the three man PTO (who's daughter graduated years ago) looked at me (the only parent at the meeting, my boyfriend by my side), slid the binder across the table and said, "take over or let it die." I freaked in the "omg, I can't do this, what is she thinking, does she know what a frickin mess I am, oh shit whatamIgoingtodo" way I have of initiating any project, and then I thought on it. This is what I do. I can do this. I built a community out of nothing. I started a blog that used to be pretty successful. I have been told that i have helped many people. I learned to advocate for my sons from scratch. I did it. I can do it. I will do it.

So I started from scratch. I built a website, started a Facebook Page, started a PTO group, started a parent support group, I asked for Open House, we followed it with a PTO meeting where we ended up fully staffed with a Vice President, Recording Secretary, Communications Secretary, Treasurer, Teacher Representative, and the full support of school building administration. We invited 12 Superintendents to have lunch with our students in honor of Disabilities Awareness Month. We asked for and got a wall by the front door dedicated to PTO business and advertising. We designed Spirit-wear, revived spirit week, and started fall fundraisers. We broke jobs down into SN parent sized tasks. 

The newsletter had 33 hits yesterday. The page has 25 likes. the PTO group has 27 members, the parent support group has 20. We have 37 students. That is phenomenal. I sent 21 invitations to other Missouri State Schools to follow us, to create a community for all of our children. Our school is fairly large compared to others, we have a school with 3 students. All of our students deserve the benefits of a PTO, whether they are fortunate enough to have one in their school or not. The PTO does more than fundraising, we advocate and try to provide a better school experience for parents and students.

So, as much as I would love to tell you that I am back, I can't say that. I miss blogging, I miss talking to you about my children and yours, but I have something else that I need to do and it takes a lot of my time. I will post, I will blog, but I don't know how often.


Saturday, June 13, 2015

I pulled Goofy out of summer school.

I made a big mistake with him this school year. He's been having a lot of trouble since we moved, mostly on the bus and at home. I considered transportation as a related service, I told you about it a while back, I'm not sure if you remember.  I mentioned it to the school and was told no. I was told that there wasn't enough documentation of incidents to show a problem. I asked for documentation and it didn't happen so I decided to do it myself. Every day the Goofy Child came home with a story from the bus, I sent an e-mail to document it... until the assistant principal figured out a way to fix that. Email can only be counted as documentation with proof that the email was read- which would be a response. He stopped responding. I ran into him in the hall and asked if he read my email, planning to write his response in my communication log. He said no. That's it. just no. So, ok, fine, I see how we're playing this. My life is a mess, my kids are a mess, my home is a mess, and we're doing everything we can to just survive so standing in the hall, looking at him, I'd had it. Fuck it, fuck him, I don't fucking care, I don't have time for this. I gave up on school. The kid was only going to be there for another few months and his next school sounds like they are a little easier to work with. We stopped homework, I stopped looking in his backpack, I stopped the extra work. I gave up.

Looking in his backpack at the end of the year, I missed a lot. I missed his MVP award and the jersey we were supposed to decorate. I missed the movie day at the high school that I was supposed to sign the permission slip for- he didn't get to go. I missed his week as student of the week and all of the activities I was supposed to help him with. Looking at everything I missed, I can see why his counselor is saying Goofy is desperate for my attention, and I feel horrible.

He was supposed to go to summer school. He needs all of the help he can get and he doesn't qualify for ESY. I signed him up, I talked with the summer school principal. It was planned. I sent him for one week. With fewer kids going, and fewer needing transportation, the schools are all put on one bus route, that means Walter rode the bus home with him. I finally had someone who could tell me exactly what was happening on the bus. Walter begs me not to make him ride the bus. He says those kids are horrible, Goofy's bully is a little jerk, and Goofy keeps getting in trouble- he won't listen. Goofy is enough of a problem that he's sitting in the front seats. Do you think I've heard a word of it from the school or seen any kind of documentation? Not at all. I'm irritated, and this month I really don't have time to argue his existing IEP, accommodations that we agreed on, or adding transportation as a related service. I just can't. So I gave up. I called the principal and I told her, I don't have time right now and I'm just not doing it. He won't be back. I give up.

The difference is this time I'm not giving up on Goofy. We need this time together. We need to work on us. This summer I am learning to enjoy my children again, learning to play with them, remembering why I think they are so wonderful. Since I pulled him from summer school last week, we have been more relaxed, fighting less, cooperating more, and our routines are getting done.  Goofy has been more willing to be the "big" kid and take on more responsibility. He helps me clean the house, helps with my errands, he helps me with his brother and his niece. He talks to me more about things that interest him, he laughs more, he spends time with me. He is amazing, and hilarious.

He's decided that swordfish are a real threat. They have swords on their face and they can stab you with them and you will die. He laid out a pretty convincing argument on why he needs to have a weapon with him at all times... I didn't have the heart to tell him that he probably won't run into a swordfish in Missouri. There is, however, a possum that likes to potty in our yard and a groundhog/squirrel team that likes to bait cars up the road. They could be as dangerous as a swordfish, I'm sure. He's learned to figure out how many guns he can buy with his birthday money. I knew his rockstar math skills would come in handy some day. He now has two new guns and a bow with arrows to keep me safe from invading swordfish. My hero.

We're doing good, we're getting to where we need to be. And the summer school principal is his assistant principal for next year. She is aware that I want an IEP meeting at the beginning of the school year, and she is aware that this time I'm not giving up. Right now, I need to work on us but I'll be ready to fight for him when school starts.

"Janitorial Work" for SN students- I call bullshit, too.

I ran into my aunt at the gas station today. I haven't seen her in a while and we've had a lot of changes. She asked me how things were going, and things are going great! Walter is on the football team this year, Alex is loving his school, and Goofy...well, two out of three ain't bad. My job is flexible, I'm the president of Alex's PTO, and trying to help out with the football parent organization. We've adjusted to the move, we've graduated from family counseling, and Goofy is rocking the individual counseling. sort of. It's busy, but life is good. We were talking about Alex's school, he goes to Mapaville State School- one of Missouri's 35 schools for the severely disabled. For Alex, it's the Least Restrictive Environment. She was excited that he is loving it and asked if the school was helping him. It threw me for a minute... right into that dark place of "progress." Is he making any measurable progress? Will he ever? She caught where I went and redirected the conversation to how wonderful it is that he loves his school. and it is.

Tonight, I read a post called I Call Bullshit. I tried to explain to my boyfriend why I am so upset, but I started crying so hard I couldn't get the words out, so I came to tell you.

The writer is upset that special education students are doing what they call "janitorial work", and the school calls "life skills."

First, she says (I say she, I don't know. I'm guessing and don't care enough to find out.) that she knows plenty of neurotypical kids who don't know how to use a washing machine, wipe off a table, mop a floor, change their sheets, pick up wet towels from their bedroom floors, and clean up after themselves... and she wants to know if we are worried about our neurotypical kids not having these life skills. I call bullshit. Not doing it is not the same as not knowing how. I've had plenty of teenagers, I know laziness. Alex isn't lazy, he doesn't know how.

Secondly, I agree with her second bullshit. We do need to put more effort into making the "whole school experience" more accessible. I have plans. We're working on them.

Third comes work experience. She's offended that it may be implied that all our kids can do is menial work, janitorial work. I totally understand the offense, I have a cousin who's principal told my aunt that he would never amount to anything, the best he could ever do was janitorial work. That didn't go over well, my aunt was (rightfully) furious, and in the end, my cousin is fucking awesome. He's a wonderful husband, a great father, and he provides very well for his family. I get it. I do. But what about the other kids? The ones who take pride in their menial jobs because look how far they've come! Right now, at this point, as he is... Alex can't even get into a sheltered workshop, much less get a "real job." He has to have a certain level of mastery in life skills to qualify. Things like using the bathroom, managing his clothing, behaving in a way that he is not a danger to himself or others, following directions, having the ability to perform a menial task... like rip a piece of paper, apply a label, mop a floor, make a bed, wash a dish...

Along the same lines... where do you think these neurotypical teenagers learned to be "patronizing, condescending, and overzealous"? How many times have you given your child an exaggerated "good job!" and an overzealous high five for something like using their words, using their fork, eating one more bite, picking up one toy...? I call bullshit. You call it "patronizing, condescending, and overzealous" but they are imitating what they see us and the students' staff doing to congratulate our kids on something well done. Isn't that the way we were taught to do it? If it looks wrong, maybe we should work on fixing what we do, work on being a better example of what we want to see.

As for peers being entitled assholes? I call bullshit on that, too. That's all in how they were raised, they will continue as adults what they see respected adults do. It's not the fault of our kids.

As for the son of the writer, I respect his concern. She is raising a caring and considerate child, however, my son has an Individualized Education Plan that is based on his unique needs. It's good to talk about justice and injustice and to want to step in when something just seems wrong, but it's just as important to talk about differences. Not everyone is the same, not everyone works on the same goals, and that's ok. Just because it's different doesn't mean it's wrong.

Then I hit the comment section because I'm not feeling exceptionally bright at 2 am. "Parents need to refuse these activities for their kids. I have." I'm sorry, have we met? Do you even know my son's name? I don't believe I saw your name on the attendance sheet at his last IEP meeting... If you don't know my son, if you are not a member of his team, you don't get a say in what he needs or what I need to do for him. He's my son, I know his needs. I fought for life skills because those are the skills that he will need to survive without me.

I hope one day Alex will be wiping the tables of his school cafeteria or mopping the floor, hearing someone tell him that he is doing a good job. I hope one day he becomes a janitor. I will proudly post a picture on Facebook and say, "Look how far he's come!"

Monday, April 13, 2015

Planning for emergencies.

I seem to be losing my place as an autism blogger. Life is busy. There is so much to do. More than I can do, definitely. I'm so tired that I can't think, but then there is still more to do, and it's mostly reflex and reaction- living life on autopilot- and when I'm not go-go-going, I'm slouched on the couch wondering if I have the energy to watch a show, still fielding questions on whether we do or do not have an attic (seriously, we live in a mobile home), wondering where in the hell this sudden obsession with attics came from, and yelling at Alex to stop jumping on the effing bed. Goofy's counselor wants me to spend more time with him, Goofy's teacher marked on his report card that we need to do homework more frequently, and Walter joined football. Right now, as much as I miss "writing," the thing in life I envy most is my boyfriend's mom's ability to nap at 4pm.

I know it's April, the time for Autism Bloggers to be blogging autism. I'm failing miserably at being online, but I have other things to share so that maybe you can work on them in your community.

Alex wanders, and I am terrified. I started with the Jefferson County Sheriff's Department. It took me a while to find someone to talk to me, but when I did, the guy was great. I asked if there was a way for me to register Alex and if there wasn't how to make one. He said that there is no database to register our kids, and no way to make a database because they have to communicate through dispatch quickly. Any notes that are added to our file have to be short. Very short. He directed me to our Zone Commander to talk about adding notes.

Since we couldn't make a database, and police officers are not miracle workers, I asked him about switching it around- what can we do to help the parents? How can we help them know what to do and to help them be prepared? This changed the entire conversation, and the man was exploding with ideas and helpful suggestions. He is willing to come to Alex's school and offer Comprehensive Parent Training on wandering. I gathered up Bacon and Juice boxes' Wandering Information Sheet and some additional questions and sent it to Alex's school. The principal and the teachers will work together to use those to make a unique form that will work specifically for our kids. They will send the form to the officer I spoke with to review to make sure that it has all of the information that the police department needs.

I called the fire department to see what we could do about alerting them to special needs, which could cause some unique challenges for them in the event of a fire. Not only is Alex non-verbal and unpredictable in how he would react to a fire, we have added locks and gates and his window is covered with lattice to keep him from going through the thin glass. Then there is the problem of what happens when they get him out? I have to have my hand on him at all times or he will run. How can they know that? The answer is careful coordination of first responders.

The Northern Jefferson County Ambulance District has implemented a STARS program with Cardinal Glennon Children's Hospital. As soon as I saw their announcement, I had to call our ambulance district. Joachim-Plattin is in the planning phases of the STARS program, she was very happy to talk to me about it, and to hear my concerns. In the event of a fire, a tot finder sticker (that is no longer a sticker but uses a suction cup to attach to the window so it can easily be moved with the child) will let the fire department know to search the room carefully. Once he is out, he is handed directly to EMS who would have his information in the STARS file and will know that he is nonverbal, that he has a history of asthma, that he wanders. They will not leave his side. If something happens at school, EMS will have his information even if I'm not there because I can make sure the school has his number.

But, then there is the problem of what if I am not there to give them the number? I called our Zone Commander to ask about the notes we could add to our file. My specific question was if we could add a note of "Wanders" and the child's STARS number so that the information goes out with the 911 call no matter what the emergency is. The man went nuts. He took not only Alex's information, but Goofy's too. I didn't think about needing to register Goofy because he doesn't have autism, he just has zero social skills and thinks since he knows someone's name he can go in their house ...or car ...did I tell you he tried to hop a church van? Lord, that child will be the death of me. Anyway, I'm not sure what he's doing with the information since there is no database and no way to create a database, but he will definitely be making sure his men know about my boys- they patrol here often. He is very excited about the parent training and the STARS program and wants to be kept in the loop on all of it.

He has some great information on how they would conduct a search. Even without an Amber Alert being issued, they have the ability to send out a Code Red. The Code Red will send an alert to every smart phone within a specified distance to be on the look-out for a child and their description. They can increase the distance as needed and after an amount of time will notify the media.

There is one part of our conversation that still has me laughing. Not in an OMG, that is hilarious way, but in an OMG, we are definitely not done raising awareness kind of way. I have nothing but respect and gratitude for this man, and I mean no disrespect at all, I truly appreciate the level of alarm in his voice when he told me that I should tell Alex to not wander into the woods because there are bad things there that will hurt him. He is horrified by the thought of what could happen to Alex in the woods and how difficult a search would be, and rightly so, but there are a thousand things I would love to just tell Alex. I'm just at a loss. I can't explain, I don't know what to say, so I make another phone call. Alex's school is in our Zone. Very soon, before the end of this school year, the Zone Commander and his team will be invited to Mapaville to tour the school and meet the kids.

I'm not sure what to do next, but I'm sure we'll think of something.

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.

Saturday, February 28, 2015

Snow Day

It's Saturday night. Walter and Goofy went to their dad's house for the weekend. I'm home with Alex, and we are blessedly snowed in. This pretty much sums up the mood tonight...

 
Did I mention that Goofy caught a cat? He did. Well, I did the second time because he was super pissed that I *accidentally* let her out while he was at his dad's for using my bed as a litter box. It may not have annoyed me so much that I would *accidentally* shove her out the door if I hadn't known for a fact she knew exactly where the litter box was from when she squatted in my lap the night before. That's her, up there. She's using the litter box now.

Walter keeps trying to name her. Trying out different names. His favorite so far is Amy. I refuse to name her. If you name it, you have to keep it and I'm still hoping she belongs to someone else. True, she was filthy and matted and starving, but maybe she just has crappy owners. One thing she desperately needs is to be fixed. I'm getting tired of the howling. Can you get in trouble for spaying someone else's cat?

Anyway, this snow storm came at a very good time. I need the break. I requested an IEP meeting for Goofy. The third one in three months.

First was the regular IEP stuff that happens when you change schools- that went well enough except he wasn't getting help with reading.

The second was to get help with reading. I don't know if I told you about that one, but it was decided that his reading trouble was ADHD related and would be addressed in the resource room during the time they work on task related skills, and his tracking and convergence problems would be addressed in occupational therapy. 

This time, we are discussing transportation as a related service. I can't do anything about the other kids. I can ask for more focus on character education, but I don't know that it would get anywhere. South of the Hwy 141 line, character education just isn't a big deal. Sports teams are. So, I can try, but it's a long shot and not going to solve our current problem. What will solve our current problem is a lot of hard work documenting and proving a need.

That's the tricky part of getting services. You, as the parent, can't just say there's a need, you have to prove it. Document everything. If there is one thing you need to know, it's that if it's not in writing, it never happened. Get as much as you can in writing. Use all of your resources- the school, your doctors, therapists, etc. Professionals carry more weight than parents, and the school can't argue with their own words. E-mail is your friend. If you don't already know how to use it, please learn. Get comfortable. Learn to be clear, specific, and direct. And don't underestimate the power of playing dumb. Ask questions, even if you already know the answer, because if it's not in writing, it never happened.

Yesterday, I left off waiting to hear back from Goofy's psychiatrist, professional counselor, and bus driver to provide documentation to help prove that Goofy needs transportation as a related service. Today, a snow storm has provided a relief. My entire world has come to a stop for just one weekend. A much needed break, where the hardest task I have to perform is to make a cup of hot chocolate and start a new recorded TV show.


Wednesday, February 25, 2015

The Virus

My Goofy Child. Lord love him. He's had a pretty rough day, but he's highly entertaining. He woke me up last night to let me know that he was sick. His throat hurts like when he had strep. I, being the loving and attentive mother that I am, told him he was fine and sent him back to bed. I knew he would try to convince me to call the doctor right then and make an appointment. We've discussed office hours many, many times. Morning comes, he's not exactly "fine," but he's not dying either. Unless you ask his opinion.

I called first thing and got an 11:15 appointment. The Goofy One does not have strep. Yet. Remember last time he "didn't" have strep and I sent him to school for three days? We'll see the results for sure in three days and then I will say he doesn't have strep. As of today, what he does have is a virus. The doctor told him so. There is no medication to help it. The doctor told him so.

I called his dad and let him know that he has a virus, while the Goofy Child listened. We passed over the virus and started talking food. Walter has been having weight issues, and the Goofy One gained 23 lbs since last January. Alex's high calorie diet is working well for them, while he isn't gaining much at all so we have to rethink how to cut calories for some kids and increase calories for the one.

Walter had a counseling appointment today, the topic of the day was trying to find a way to take more stress and responsibility off of Walter. It's a whole big thing where Walter doesn't want to be the oldest anymore, he feels like he's a co-parent, etc. The counselor asked if Goofy could take more responsibility for himself. I had to laugh. He's come a long way- he can independently pick out his clothes and get dressed- but that's a long way from taking care of himself. He absolutely needs help making a peanut better and jelly sandwich and there's no reason Walter can't make it once in a while.

Once the day was over and we were all home, the Goofy Child went looking for food and found a corndog. He loves corndogs. He found it on his own, microwaved it by himself, and ate it. A little while later, he came looking for me to ask me to clean up the mess he accidentally made in the kitchen floor. Lord, have mercy, it was awful!

I yelled for help. I asked Walter to get me a towel that was ready to be trashed, and bring it here. He huffed and puffed and sighed like I am such a slave driver and went to get the towel. We're standing on opposite sides of the kitchen. I with my eyes covered, trying not to gag and he looking at the mess with towel in hand. "Please, can you just ... put it over it?" "Um, no. No. Your kid." I'm texting my boyfriend, wondering what the hell I'm going to do about this one, thinking... well, the counselor did ask if Goofy could take more responsibility for himself, now would be a good time for that... Oh, my God, how am I going to do this!? For the first time since the decision was made, for a split second, I almost regretted my divorce. I didn't quite realize when I signed those papers I was giving up the only person in the house willing and able to clean up puke. But, no. I'm a strong woman. I am a single mother. I have done many things I thought I couldn't do. I need to put my big girl panties on and just do it. I walked over and threw the towel down. Then ran for the bathroom.

Round two, I found he got the edge of the trash can. Then ran for the bathroom.

Round three, I got it. I cleaned it all up and sanitized the hell out of everything it touched.

I decided we were so not doing tacos for supper. I made chicken patties and mashed potatoes because it's the closest thing I have to chicken noodle soup right now. I really need to get to the store. After eating all of his potatoes and two bites of his chicken patty, the Goofy Child remembered his dad's miracle cure. Toasted butter. Uh-uh. I'm not going to keep putting food in that belly. It needs to keep what it has before I go making more food. I told him not right now. So he called his dad.

He told his dad that I didn't know how to make the toasted butter, and he really needs it, he has a virus. He asked his dad to come and fix it. Damnit. We should have thought of that when there was puke in the floor. I heard him try to explain what toasted butter was, "you know, you made it last time and it cured me? Mom says she doesn't know how to make it." That's not what I said, but ok. I heard him explain that he has a virus, "I almost threw up last night, but today is just bad. I hope I don't get the kid cancer." What!? "Kid cancer." I can only imagine what his dad is saying. "KID. CANCER. You know, like Papaw, except for kids?" Don't laugh. "Remember, that kid who almost died from the kid cancer?" Um...must be a prayer thing. or Fox2 news. "Yeah. Well, this virus is pretty bad. I have a virus. It's almost like kid cancer." Oh, Lord. Don't laugh. The Goofy Child goes on to asking if his dad ever had a virus, and if it was bad. But it couldn't have been as bad as Goofy's virus. He thinks his toe might be infected, too. Then, the asshole threw me under the bus. "Mom! It's 'regular toast,' dad said. He said it's just 'regular toast.' " I immediately picked up my phone and sent a message thanking the traitor for giving the kid the recipe and suggesting he take custody until his magic toast cure sends the child into remission. He declined.

Once I was done laughing quietly, I tried to explain to Goofy that a virus is no big deal, it's just like a cold. It'll do what it does and go away on it's own. It's nothing like kid cancer. It's not even serious. He disagrees. This discussion is going along the same lines as office hours. I'm just going to let it go.

Monday, February 23, 2015

Phone Calls

I was going to call the governor today, but I got distracted. It seems absurd that that feels so casual.

I've been asking about getting a school website for a few months now, but I didn't really follow up on it because I've been busy with IEP meetings that feel more like hostage negotiations. All IEPs are settled. All team members are on the same page. I thought now I could get started on this one goal. Get a website started. Simple.

But then Goofy started chasing neighborhood cats. Sounds innocent enough, doesn't it? Until he takes the back end of a hammer to your recently repaired ductwork because he thought he heard a cat, he almost saw a paw. And a one eared concrete fox, among other random, broken objects show up on the kitchen counter because he found it under a trailer (hopefully your own), and after much effort the street cat is captured to the dismay of that cat, our cats, and myself. and he wants more and there are more running around because street cats multiply faster than rabbits in this neighborhood.

Goofy started counseling, then Walter started counseling, then the sister started counseling, because it seems that now when you go get your kid evaluated, you don't just get a diagnosis and a good-luck-with-that before they send you out of the office, now they give you the diagnosis, a good-luck-with-that, and a recommendation that you see a licensed counselor because something really has to be wrong for your kid to be that fucked up (just me?). I was almost afraid to mention Alex's ADHD again for fear of yet another referral. As it turns out, we got a pretty good one this time. Lucky for me since I get to see him three times this week. Then there's the impossibility of finding a dentist for Alex, a referral for a sleep study for Goofy, and yet another specialist for Walter. So the website got put on the back burner.

Last week, I had a few minutes while I was feeling froggy so I called the Missouri Schools for the Severely Disabled administration office to ask if we could please have a website. I've had some pretty good luck with this office so far, it only took a 5 minute conversation on why Alex needs a walking harness to get the promise that ABA would be provided and his Behavior Intervention Plan would be followed in his new school. Unfortunately, the answer to the website was no. The answer was no because they are not a public school, they are the Missouri Schools for the Severely Disabled. This answer left me a little hopeful, so I wanted to make sure of what I was hearing. "So, what I am understanding is because of my son's disability, we can't have access to the same educational tools and resources, and the same level of transparency that have become the standard for his non-disabled peers?" Before I could ask to get that answer in writing, I was transferred to someone else.

This phone call is the perfect example of why you should research the office you are calling- at least know the names and titles of the people you could be talking to so that you will know when you reach the top of the chain of command. The person I talked to told me that getting a website would take an act of legislation. She suggested that I talk to my senator or representative. It irritated me, I asked for the Superintendent. Seems I was talking to the Assistant Superintendent. She said the Superintendent was all for social media and websites so I would be wasting my time with him, the problem is in the state, I need to talk to someone above him and that would be the senator or representative.

I researched and found that it's the governor or the State Board of Education that I need to be contacting so I definitely want to be prepared first. I'm getting ready. Thinking things through. Planning my argument...

Then I get a call from the Goofy Child's principal. There has been another behavior incident on the bus. I'll tell you right now, this school is most definitely not a National School of Character- a fact that disturbs me as much as it pisses Goofy off.  I am reminded that there are people and positions that you run across sometimes that don't care whether or not they have a valid argument, they will stammer and stutter and talk you in circles until you want to rip your hair out or their head off and in the end, they will offer a solution that is less of a solution and more a mockery of justice designed to placate a parent and get them off of the phone. Goofy will miss 15 minutes of his recess for defending himself in yet another bullying incident, this time with two 5th graders, and room will be made in the front of the bus by moving one of the kids in the first six rows of students in need of additional supervision so that Goofy can be protected instead of addressing the general behavior of students on the bus or using their "limited resources" to put another adult on what has been described by staff as a rowdy route. I wonder if it would take an act of legislation to get a bus aide... since I'm on the phone anyway, right?

I will call. We will get a website. Next week. This week, I have a counselor to talk to about bus bullies and calm down strategies. And, maybe we'll read Alex's new Llama Llama and the Bully Goat.





Saturday, February 21, 2015

The reason I write... or, don't write.

As you have probably recognized from my lack of posting, I'm struggling with my blog. One of the many reasons for my writing is to raise awareness and I am sick of raising awareness. Since moving, I've had problems with raising awareness. That problem is mostly the people who are becoming very aware. Obviously, more aware than they'd like to be. I've had enough. It's too hard.

One day, on the way back from a visit at Mommy's, I took Alex to a pretty remote gas station that was the only one on the way home. Alex flipped out. All I wanted to do was pay for my gas and go home. He just wanted to go home, gas be damned. I took him in with me and had a very hard time holding onto him while he tried to escape and loudly stimmed his objection to being in this place. (It was dirty and cluttered and didn't smell very nice, as remote gas stations usually are, so I can't blame him. But, it's the only one on our path home.) One of the cashiers was busy and the other quickly made himself look busy. I could have chalked it up to laziness instead of a refusal to wait on us if the woman in front of me hadn't taken a hundred years to buy her lottery tickets while we stood there struggling to stand in line, and the man continued to make himself look too busy to take my $20 until the split second someone stepped in line behind me. Then, without hesitation, he offered them a smile and gestured them to his register. We now drive the extra 7 miles down the highway where the friendly and chatty cashier thinks my son doesn't answer her questions because he's shy.

One day, I had to take him with me on errands. He was having a pretty good day until I messed it up by taking him places he did not want to be. I was out of deposit slips so we had to go inside the bank, he protested by throwing himself around to escape me and loudly letting me know he wasn't happy. When another teller opened her lane and called us over, he bolted while I tried to fill out the deposit slip she gave me. I chased him down and brought him back. She offered to fill it out for me while I held onto the squirming, unhappy child. She had no problem giving me a few extra slips so that we could use the ATM again. It was not a good trip, and I'll be damned if my uncle wasn't at the next window to witness the whole thing. He made small talk as if nothing was out of the ordinary.

After the bank, I had no choice but to go to the pharmacy. Some of the boys' prescriptions can't be called in. The paper copy has to be handed to the pharmacy staff to be filled. Alex was doing pretty good, so when she said that the prescription could be filled in 5 minutes if I'd like to wait, we waited. I sat him in a chair and tried to entertain him, he was willing to be entertained. When he dove out of his chair and knocked me on my butt with his hug, I caught the cashier's smile. Then I realized a pharmacy probably sells diapers. He tried to clear the shelves as I tried to calculate size. By the time we were ready to check out, there was quite an audience gathered, just waiting for our style of awareness. He pulled and dropped and tried to get away as we were checking out. I sat him on the counter in front of me and wrapped my arms around him as I tried to sign for the prescriptions. I swatted his fingers away from the pin pad as I tried to enter my number to pay for our purchases. I had just hit "enter" when I felt him slap the entire overflowing basket of complimentary car air fresheners off of the counter. I had one hand on him as he flopped around in the floor like a fish out of water and the other hand gathering as many pieces and I could stuff back in the basket before slapping it on the counter and apologizing while I reached for our bags. I made the mistake of making eye contact with another customer. The look on his face had me blushing even more as I grabbed our stuff and bolted. Driving home, I cried.

We go to DeSoto Wal-Mart even though we are closer to Festus because it's not as crowded. As long as I avoid noticing the other shoppers, we're good. There hasn't been a huge catastrophe yet. Oh, there have been looks and comments, I just actively avoid seeing them. My boyfriend tells me about them after, which I am fine with, I like hearing his stories, I love the way he sees things. There are some good people there, and there are some that I am thankful not to have seen. One day I didn't want to make what seemed like a long drive just to go to the store, we went to Festus. I found a parking spot and parked. I sat back and sighed. I thought of the stroller and the people and the looks and ... I just couldn't. I looked over at my boyfriend and I said, "I don't want to do this. Not here." My boyfriend looked back at me, understanding what I was saying, "then don't." I'm so sick of raising awareness. It's too hard.

We ended up in DeSoto. Walter wanted to go look at electronics. My boyfriend has him interested in audio stuff. So, fine. I sent them off, taking Alex with me. It'll be fine. He's in his stroller, we're in his favorite store, we're fine. Except we weren't. I'm not sure exactly where things went wrong, but the tipping point was the valentine aisle. One of the reasons I sent the guys off to play was so that I could get a card. By the time we left that aisle, I was flustered and bleeding. By the time we made it to the grocery side, I was close to tears. That's where I ran into Alex's kindergarten BFF's mom. I talked to her on the phone a couple of weeks ago about PTO business. She has such great stories about her daughter and acceptance and how the kids in her other daughters' lives are aware and they like the BFF for who she is, they see that she is just like them but different and they like her. Awesome, right? I think so. I was hoping she wouldn't notice us because I just couldn't handle people right then, but she did. Caught up in what she was doing, she still noticed. She looked up and greeted us, all friendly like. Then she really looked and noticed Alex in his stroller. The look of surprise was the last straw. Alex is one of two kids in his entire school with a Behavior Intervention Plan and I had to call the state to make sure he got ABA and kept his BIP. One of the drawbacks of a school with 34 students. I see lines of kids who walk nicely down the hall without a 1:1 aide who can never, for even a second, take their hand off of them. Alex's behaviors make him a danger to himself and others, especially himself. In his stroller, he's not throwing himself to the ground or bolting. I don't even have to buckle him in, he's happy to sit there and be pushed through all of the wondrous aisles of this magical kingdom. He's even started asking for Wal-Mart by name, which is huge considering he doesn't name the majority of his siblings or parents. She wasn't rude, she didn't say a word, but the surprise on her face was just the end. I've had it. I grabbed the cleaning supplies I absolutely had to have and made a bee line for electronics. "I'm done. I don't even care. We need to go now." I don't know if there was something in my look, or something in my tone, but a glance at the cart to see I bought no food, there wasn't a single argument from my boyfriend or my son. We left without the groceries.

Someone contacted me recently about starting a blog. They want to start writing about something important to them, and they don't know where to start. I told them to figure out what they want to do with their blog and start writing. Several times in our conversation, they said, "maybe it's too hard." It pissed me off. Whether or not it's too hard depends on if it's worth the effort.

Goddamnit.

I know. I'm going to hell for that one.

It's relatively easy to advocate for acceptance in a place that awareness has a good start. In a place where the majority are unaware... where the school will be the first to tell you, "if we can't control their behavior here, we have no business taking them in public."... where the Speech Therapist calls the vocalizations of an autistic child "animal sounds"... and a middle aged man has never seen such a scene... it's fucking hard.

Whether or not it's too hard depends on if it's worth the effort.

 It's about more than the possibility of not getting horrified looks when we step into public, of people being politically correct. It's bigger than what happens in the grocery store or the gas station. Those are the small things that trip you up.

The problem, simplified, is that Alex doesn't have a school website or a tweeting Superintendent. Sounds small, doesn't it? Alex goes to one of Missouri's 35 State Schools for the Severely Disabled. The question I keep getting is- why do you need a website? I have a thousand answers for that depending on which view you want me to look from- school staff, parents, PTO, a member of the community... I can tell you about the need for transparency, accountability, access to educational resources... I can tell you about how much easier it would be to find all of the information I need in one place... but the question isn't why I need a website. The question is why doesn't the MSSD have websites for their schools, when school websites have become the standard for public schools? The question is why don't I and my son have access to the same educational tools and resources that his nondisabled peers do? Why do we not have the same insight into his school that the parents of his nondisabled peers have?

The problem is equality, equal access, and freedom from discrimination. No matter if it's a grocery store, a gas station, a city playground, a sidewalk, a school, or a job. The solution starts with awareness.

Whether or not it's too hard depends on if it's worth the effort. To me, it is.

Thursday, January 15, 2015

Guest Post: A Dog for the Cat

I would like to ask a favor. I don't do many guest posts but this one is important to me. Andrea is a pretty good friend of mine. Even though she is states away, she has been a very big part of my support network. When I needed her, she was there and now she needs us.

A Dog for the Cat
The Cat is an amazing little girl with Asperger's. She has really had a rough go of it lately. She had some bad reactions to meds, and some bad meltdowns. Three days before Christmas I had to make the decision to have the Cat hospitalized. Her behaviors were out of control and try as I might, I just could not keep her safe at home. It broke all of our hearts to make that choice. We were concerned that we may have to send the Cat out of state for long term residential treatment. However with a med wash and some changes at home things are looking up. We will be bringing the Cat home soon.
We are not out of the woods yet. Asperger’s isn’t something that will just go away. But there are ways to make it easier for her. We have made the changes that we can. We now have a visual schedule app for her daily routines. We have slimmed down our expectations, and made it easier for her to keep her environment clean and organized.


We have done what we can at home. But going out in the real world is something we can’t control. Going grocery shopping causes the Cat a lot of anxiety, riding in the car is hard on her ears. School is challenging, but manageable with lots of supports. There is something that can be done to help the Cat navigate these places.


A service dog would help her be able to better navigate her world. The dog will help her navigate social settings, help soothe anxiety, and be a constant companion. There is a safety aspect as well. The dog would be trained to track the Cat as she is a known runner. A service dog would be able to accompany the Cat wherever she goes, school, the store, airplanes, doctor appointments. The Cat would gain a level of independence that she will not have otherwise.

Right now because of her running and SIBs the Cat cannot be left alone, she needs constant supervision. With a service dog, the safety risks are minimal. The dog will be able to help calm the Cat when she is getting agitated, to provide deep pressure and sensory input, to lead the Cat away from environments that are over-stimulating. This dog will change her life.

We have found a wonderful puppy that will be trained to meet all of the Cat's needs, and a wonderful training organization that is free of charge. We are just looking for some help with the upfront costs. Please, whatever you can donate will be so greatly appreciated, and will make a true difference in the life of this sweet girl.


Click here to support a dog for Cat by Andrea.

Saturday, January 10, 2015

More Than A Number

Alex's evaluation results will tell you a lot. He's a 12 year old boy with medical and educational diagnoses of autism. His receptive language is 6 months, while his expressive language is 12 months. His cognitive ability is 6 months, and his physical abilities are between 12 and 18 months with a few unspecified splinter skills at 28 and 36 months.  There's a lot more to the report, 7 +/- pages more, all saying the same thing. All painting the same picture of a boy I don't recognize.

I gave you a list of things to hold for me, to remind me of when the report came in because I knew how hard the report would hit. The night before the meeting, in a fit of frustration and grief, I called that post nothing a bunch of pretty words that were supposed to make me feel better. In those moments, I felt that the progress I saw was a lie, nothing but a list of wishful thinking. I knew what the report would say.

Standing in the school lobby, talking to the school psychologist, there's a new problem with his placement, but it's not one to worry about because with his scores, there's no way he'd be denied placement in this school.

I sat there and listened to his scores, my eyes glued to the page so that I could absorb the information and so the team could not see me holding back tears. I purposely focused on other subjects for the meeting. The scores meant his placement would be accepted and nothing more. I wanted to know if we were keeping his current 1:1 aide and when I would meet his occupational and speech therapists. I wanted to know when to expect the IEP meeting and what would be discussed there. But the big one, the one I am anxious to know is- are we keeping his current 1:1 aide?

I thought I was avoiding the truth, trying to find anything and everything to distract me from the reality of who my son is and what he is capable of. Late Friday night, driving the backroads on a made-up errand, nothing to distract me from my thoughts, I found the truth. I am not upset that this report tells me who Alex is, because it doesn't. I haven't been kidding myself, I know him. But this report does tell me what other people see when they look at him.

Alex's evaluation results will tell you a lot. They will tell you that he doesn't understand what you say to him. They will tell you that he can't tell you anything. They will tell you that he's not able to think like a normal 12 year old boy, his mind is just not there. He's a 6-12 month old baby in a 12 year old boy's body. They will tell you not to expect too much from him, he's just not capable.

When Alex was in Mapaville in Kindergarten, I was in his classroom a lot. I took him to school pretty regularly, I saw his staff with him, they taught me a lot. I will always be thankful for them. In first grade at a new school, I was asked not to bring Alex to school, it upsets his day. In the special school, I could get as far as the front hall. Back at Mapaville now, I'm back in the classroom. I drop him off and pick him up pretty frequently. I see his staff with him, and they talk to me.

The first day I met his staff, the loud one took charge. She was asking about his behaviors, but she wasn't actually asking. She asked if he bites, but instead of using her words, she used the action. That was odd. and uncomfortable. Like Alex wouldn't know what a biting or headbutting motion was or that his behaviors are a secret...I don't know, but it was not ok. Come to find out, she's not his 1:1 aide. Thank God. Alex would not work well with her. She's nice enough and all but it just would not be a good match.

Another day, I took him in for some reason and helped get him to class. I was standing with my back to his kindergarten BFF, talking to him and his aide, when out of the corner of my eye I saw a flash of ruckus. Before I even registered what was going on, I was pushed hard enough to get my attention- not to hurt. I turned around to see why she pushed me, when from across the room, without hardly a look, came a shout of "hands to self!" When I saw her, her face was red and she was visibly agitated. I said, "You look upset, are you ok?" She sat back in her seat and started brushing her hair back from her face, obviously working on calming herself.  I don't know the girl very well, and I don't know her usual behaviors or triggers or what the other girl did or did not do to upset her, but from a stranger's perspective, it felt like all she needed was for her upset to be acknowledged. I don't want someone to see Alex act out and assume the problem is his behavior. All behavior is communication, look for the reason. Get his side of the story.

 His evaluation results will tell you that he's not able to have a side of the story. His results will tell you that he needs to be managed and that his behaviors need to be stopped- not addressed. This is what people see. He's like a puppy that needs to be fed, pottied, played with, and trained.

This is why I love his aide. Not just in comparison to the possibilities, but all on her own. She's a good woman. She talks to Alex like I do. She watches for signs and reasons. She asks me what I think and how I would handle things. She is so awesomely respectful. He's not a baby, and he doesn't seem to be just a job. He is Alex. She is a quiet advocate. She knows the importance of routines and she is determined to meet his needs. I tried to leave with him one day and she softly but firmly asked if I thought he needed to use the bathroom, she asked him if he needed to go potty. She talked both of us through his potty routine, complete with reasons. He didn't do any of the work and I was distracted by our conversation so I tried to leave. She softly but firmly asked me if I would like for him to wash his hands, and asked him if he wanted to wash his hands. She talked him through the process, asking him to do most of the work, she deftly avoided known behaviors without making a big deal out of it. She knows how to work with him and how to direct me with ease.

I love his teacher. I know first impressions are not always accurate (see: this very post), but I jump on them anyway. every time. This one seemed like she was going to be a problem. When Alex came, they got a new classroom. If I remember correctly, she was hired specifically for this class- brand spanking new. And, she's young- I mean young. She's very quiet, and seems timid. My first impression was- fuck. She's proven that, like Alex, looks can be deceiving. She is very capable of controlling her classroom while staying both quiet and respectful. She listens to her students. She talks to them the way a familiar person would. She is watchful and very much aware that they are more than scores and percentiles, they are people.

I will not say the results are wrong. He legitimately earned his scores, but they don't tell the whole story. He is more than a number. He is a whole, complete, perfectly imperfect person. I guess that's the point in me writing and sharing our story, isn't it?