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.


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.