Saturday, December 13, 2014

Goofy's New "Team"

I started enrolling the boys in the new school a month before our move date so that we could have everything in place before they started and there would be nothing to worry about. The process coordinator has been great, she had a lot of hope for Goofy in his new school. She said he could get remedial reading and another reading and RtI reading. Reading would totally be addressed. I was excited. We talked, we made plans.

As the moving date came up, I called the school to find out how we were going to get together to be sure that Goofy's plan is followed and how he will continue with things that are comparable to what he already has. I have not had any luck with counselors in regular schools so far. Anyway, I was told there was no need. No need for a team meeting that I was requesting! Not cool. So, we're discussing in a less polite way than "discussing" implies when she basically tells me that his current IEP doesn't matter because they will write a new one within 30 days and informs me that I will be invited to attend that meeting. I got snippy and she promised to have the process coordinator get in touch with me.

The first day of school came and I still don't know who's doing what or how his needs will be met. I go meet the resource teacher, who is also very nice. She said she worked in our old school and I am so freaking happy because it's a little bit of a link to what we are used to. She will get it. I just know it... She's pretty good but I don't know how much any of the team are listening.

He's been getting 30 minutes per day of remedial reading since the start of first grade. It's one of my biggest concerns, the one I talked with the process coordinator about the most because everything else is covered in his IEP. His reading trouble is well documented in his IEP and in his education record. We had a plan and in the course of two days, the teacher decided that based on her casual assessment, he didn't need remedial reading anymore. I asked why he wasn't evaluated by a reading specialist and when I didn't get an answer, I tried to make an appointment with the principal. She wasn't immediately available so she called me back with a phone call that absolutely belongs in the Wal-Mart check out lane...or on Jerry Springer. So, I went to the administration office to talk to the Director of Special Education, she wasn't there but her assistant was very helpful and hopeful and there are more reading programs available in the school than just remedial reading.

The teacher emailed me back again to let me know that the reading specialist said he read level J just fine, he will not be getting remedial reading. We could have dealt with that, I think, worked on finding one of those other programs the administration office mentioned...but the tone of the email told me to back off and butt out, while the words told me that the teacher and resource teacher would let me know if there was a concern. Then I lost my temper.

I'm starting to wonder if I'm even capable of being nice anymore. There was a point in time that I could rationally discuss things, Alex's best principal ever taught me well, but I feel like I'm just too tired to bother and I'm irritated about having the same argument over and over.

The past 6 months have been rough and the final abrupt change has knocked us on our ass. I thought I had prepared for it, I thought I had it under control. We talked it through, we eased into it, we teamed up with the schools and wrote detailed IEPs... Everything was perfect. Both teams were awesome and did everything they could to fully inform the new schools on the boys. We worked together and talked things out.

However, I didn't count on a pissing contest. The regular school district has an attitude problem (Alex's actual school is great). Everything going wrong at the new schools is being blamed on the old schools for being lazy and incompetent, everything the old schools did to ease the transition is being ignored. Goofy's new school thinks they know best, better than the team that worked with him or the parents that live with him. I think we're back on the "professionals" and "credentials" argument. I am not at all looking forward to Goofy's IEP meeting Monday.

I have come to the conclusion that I can't handle everything on my own. Walter and Goofy are really struggling with the change, and I am not handling it well. Being a single parent is a hell of a lot harder than I remember it being. I decided to ask for help. This week we are starting family counseling and I started looking for an advocate. Even if things don't go well Monday, I have the right to request an IEP meeting at any time.

Monday, December 8, 2014

Settling in.

Our first week in our new home... The transition has been nothing short of spectacular. For example, the Goofy One decided to show me exactly how much he appreciated all of the much needed changes with a little love note..


"I'm going to run away because you're mean to me."

  
I congratulated him on effort and specific letter formation and offered to call his dad to come get him but he said no, thanks, he'd rather live in the wild. After he took time to think about where he would find macaroni and cheese in the wild, he decided he might be better off apologizing for his behavior.
 
Alex finally stopped crying. That was a relief.

Walter went straight teenager on me. That sucked.

Then there were the schools. Alex's new school is wonderful. He's only attended one day, but the time leading up to that one day puts  me at ease. Everyone has been great. And, the best thing about living in a small town is that just about everyone is connected in some way. Alex's new 1:1 aide is a familiar person- friend of a friend of a friend kind of thing. She's a good woman. One I know I can trust from the gossip I've heard over time. He met her Friday and spent some time getting acquainted. I didn't even cry dropping him off this morning, and after being with me for 12 days straight with neither one of us getting a break, he was happy to be rid of me. Not an anxious look to be found anywhere on his face.

The Goofy Child is in the Primary School, which is grades K-2. The best thing I can say about this school so far is that he'll only be there for 5 more months. *please, God, don't let there be snow days* The Process Coordinator is his until 6th grade and I freaking love her. The Director of Special Education and her Assistant are very helpful and are absolutely willing to take time to listen and help.

The one that had the most impact, though, was at the high school. Every cloud has a silver lining, you know. It was a really crappy Friday, following a really crappy week. I had several stops to make before our 10:30 appointment to meet Alex's new staff and Walter had forgotten his medication and his house key. We signed in and waited for him in front of the office. We were talking to Alex, keeping him occupied with abusing his naked, finger-paint spattered baby when a woman came out, pulled up a seat and injected herself into our small group. "I don't mean to pry, but can you tell me what we're dealing with on a daily basis here? Is it autism?" She surprised me, but she was so confident in her question that I didn't think twice. We were talking, she was telling me that she sees a lot of parents of special needs in her work and they usually look worn out and haggard, but I don't- she liked that (*snicker* all she needed to do was wait a few hours and it would be a whole new level of haggard). I told her that Alex is pretty easy going and pointed at Walter as he walked up, telling her I couldn't do it without him. She looked at Walter and told him what a good guy he was and explained that her mother was disabled. She told him some of the feelings she had about taking care of her mother as a teenager- she didn't ask for this, it wasn't fair, why does she have to do it... hearing her acknowledging those feelings and voicing them out loud, I could see Walter visibly relax. He smiled and nodded. She had a positive message, but I don't remember what it was. What I remember is it was exactly what Walter needed and his entire demeanor changed from that conversation. He won't talk to many people about the difficulty of taking care of a brother with special needs, he won't admit that it's fucking hard, but I hope he talks to her when he needs to because she gets it.

Going into our second full week, we're all feeling a little better, a little more settled and secure... until about 6am when the house goes nuts. You know how well a mobile home is insulated? It's not. Our poor neighbors. They will never let their children play with my children. The Goofy Child is literally bouncing off of the walls... and the refrigerator... and the trampoline... and the washer... and gives me a freaking heart attack when he crashed down through a heater vent. I was sure he broke his leg. I'm freaking out, he's freaking out, Walter's freaking out, Alex slept through the whole thing. Luckily, his leg was not broken, but he did end up with a nasty bruise, and I'll be damned if he didn't start back with the non-effing-stop bouncing and hollering as soon as I emailed his staff that he was fragile today.

Remember the silver lining? One of our cats has been a pain in my ass lately. Pooping in floors and wetting beds and all around irritating the hell out of me. He took one look at the open vent and decided to make a run for it. He slithered through the vent to the underside of the trailer quick as he could go. I can't help but think of the Shawshank Redemption and *cough* into my arm so the Goofy Child won't think I'd dare laugh at a cat in "danger." I was hoping he wouldn't make me post missing flyers and that the cat would find someone else to torment when I remembered the damned thing is microchipped. Lord, help me.

Yes, I'm mean. We covered that in the first paragraph.





Tuesday, November 4, 2014

Breaking the Cycle

 A year ago, I told you about getting back in touch with my mom, about my hopes and excitement about rebuilding our relationship. I had a lot of big ideals and pretty words on the subject. I thought I had grown up. I thought it would be wonderful. I thought I could handle it.

I told you about the person I used to be. I told you that I have spent years rebuilding my life, taking care of me, becoming the person I want to be- one day at a time. I am happy with who I am- I've worked hard for that. I am mostly confident, semi-strong, and definitely independent. I know my worth.

I love my life, I have been blessed a thousand times over. I get along with my exes, I have some amazing children, my granddaughter is adorable. I have a wonderful boyfriend, a good friend in my son's step-mom, I'm reconnected with all of my siblings, and I'm going home. Good things are happening, and I have great hope for our future.

Over the past year, I haven't spent much time with my mom. There are texts here and there, spotty visits that never last more than a few minutes. She exists and I'm acknowledged, that's good enough. Until we are forced together.

For one week last month, I spent quite a few hours with her helping my brother. Every single thing I have done in the past 9 years is gone. I am humiliated and ridiculed, criticized, cut down, and slapped in the face with every mistake I have ever made- with quite a few lies thrown in- to break me down even more, to make sure that I am completely and utterly put in my place. Three nights in, I broke. Everything I worked for shattered. I cried my way home over what a piece of shit I was. How worthless and undeserving of anything good.

The next day, I couldn't take any more. In the middle of her show, I stopped what I was doing and sat down to get some relief- you can't be attacked for nothing, right? I watched her, trying to decide... Is she so stupid that she doesn't know what she's doing...or is she mean enough that she just enjoys it? I quietly whispered to my boyfriend that I should have stayed home where I could at least be useful. She stopped in the middle of critiquing the room to raise her glasses and look at me. The way she stood there with a look of disgust and self satisfaction on her face, waiting for me to either acknowledge how pathetic I was or do something else that she could judge, answered my question. I smiled, spread my hands and laughed- "what? I'm not doing anything. Just sitting here."

For a week, I frantically searched for the cause. What did I do to make her hate me like this? What is it about me that makes her so angry? How can anyone care for me when I am such a horrible person? It must be because they don't know who I am. I ripped myself apart using her words, the words I've heard repeatedly since the first time I remember her grabbing me, shaking me, and screaming at me that her life was my fault.

When that got old, and she found a new target, it turned into he said/she said with everyone supposedly having something to say about me- making her my only "friend" and so very sorry that she believed for a second anything anyone had to say about me. I'm starting to think I'm a bit insane, which isn't too far off considering the mental health issues we've been dealing with at home and the fact that I am my mother's daughter and that woman wears insanity more naturally than anyone I've known. I've been torn down and torn apart, twisted up in truth and lies to where I'm questioning myself and those closest to me.

In the end, I see one thing clearly- I am a better mother than I ever thought I could be.

That Thursday morning, I sat in Walter's SRO's office with him. I saw his tears overflow as he told me his meds just aren't working. I saw his sadness as he explained on a paper that is going in his permanent record why he deserves two days of ISS for bringing tobacco products to school. He was so upset that I took him home with me that morning. We left the building with more understanding from the officer and the head principal than I ever expected. The officer told him he could come in and talk to him any time, no matter what. We walked out side by side, in silence. We were almost home when he looked at me with a hopeless expression, "I really messed up." I can hear in his voice what he is saying, how seriously he's taking this. It's serious, but I know what he's doing because I have been there. I have done anything and everything to try to feel better, feel better about myself, and sometimes to just feel anything. I get it. "No. You made a mistake. It's not the end of the world."

Some relationships cannot be salvaged and should not be rekindled, but sometimes, those relationships are the ones you learn the most from.

Wednesday, October 8, 2014

Mapaville State School for the Severely Disabled

Today is a beautiful day. The last time I talked to you I was wondering if I needed a better attitude or a freaking break. I have both. Great things have been happening lately- my work hours were cut (thank you, Jesus), Goofy's area coordinator is working hard to try to work with me, Goofy is getting the Functional Behavior Assessment I requested, the technology lady has awesome ideas to help Goofy with writing (they are already being tried out and as a result, Goofy can already independently navigate the programs he needs at home), and the house my sister is buying has passed all inspections and they are definitely getting it. This means that we will be moving very soon since I am getting her current home and I am getting things ready.

Today I toured Alex's new school. You know they have a shady history and I was very nervous about re-enrolling him there, so I wanted to check them out in person before putting him in a position that risks his safety/education. I called to talk to the principal because I want to know what he is doing in the school to make it better, I have a lot of questions to ask him, and I needed to schedule a tour. He was able to take my call pretty quickly, which is impressive, but he wanted to check a few things out before scheduling the tour. My first thought was oh, shit, what is he covering up before he lets me in? It wasn't long before he called me back to schedule the tour, so it's possible he needed to check me out since I told him I had already talked to the regular school administration about enrolling Alex in their school. That's smart. I like that.

Walking through the parking lot, my mind is on wandering. I'm looking at the wooded areas, the weeds, the proximity to a highway with a 60 MPH speed limit. If you have a wanderer, you know exactly what I mean. No matter where you go, you automatically check escape routes. I'm wondering what their school plan is and I'm worried that I'll be able to walk right in the front door with it being such a small school in such a small town. I'm wondering... if I can just walk in, how easy will it be for Alex to just walk out and what will they do when that happens? I walk up to the door and read the instructions for entering the building. Ring the bell and wait to be admitted. *sigh of relief* security. But then I read on, if there is no answer, call the school. They were nice enough to include their phone number, which makes it a well thought out sign, but it leaves me wondering who's watching the door. The system is great for keeping people out, but seems to suck for keeping people in. I asked about their wandering plan, and they don't have one, don't think they need one. I'll tell you right now, I don't think the school has ever been on fire but I can guarantee they have a plan for that. Here is a great post from Flappiness Is on autism elopement protocol for schools. Honestly, that is my only concern with the school. Considering the concerns I went in with, that's pretty freaking good and easily fixed.

After being buzzed in, I walked to the front desk where I was immediately recognized as Alex's mom. After being gone for 6 years, they still remember him. That is awesome. Within just a few hours of my call, before I even walk in the door, the entire school is aware that Alex is coming back, and they are excited. I had forgotten what a "family atmosphere" this school has. It feels good, it feels like coming home.

The principal came out pretty quickly to greet me and walk me back to what looks like the IEP room, where we are met by the home/school coordinator. Now, anyone who works with me knows that when I have a list of questions, I have a list of questions. Some people are ok with my insanity, others get annoyed fairly quickly. These two were ok with my questions, and happy to answer them even if there were a lot. We're on the same page with staff change, I'm really liking that. He's open to new ideas, I'm really liking that, too. He's working on increasing transparency as much as he can, awesome. And, I get to name his school without the risk of cease and desist orders or other threatening letters from school attorneys, *woot*!

Of course, I asked about the PTA and yes, they do have a PTA...with only one parent participating. What the hell, parents!? Where are you? Why are you not involved? Serious question. I know the last time I asked your answers were the availability of child care, the time of the meetings, coordination with the kids' schedules, not getting notices, and socialization- both wanting and not wanting it- is the answer the same? What can we do to help you be more involved in your child's school?

They have a lot of the things Alex has in his current school, they are working toward some that are missing, and they have some new things going. This lovely man has some big ideas on where he wants the school to go, and he is eager to talk about it. I worry about that a little because I worry that he could be so invested that he burns out. The last lovely man I worked with got quite a bit of his list accomplished before he decided to move on, so I'm not sure that I would need to worry about this one, but I do.

As far as the shady past, it's just history. They have checks and balances, classroom observations, parental involvement (sort of), and a very interested principal. He knew the kids by name, he acknowledged staff, he knew who Alex's kindergarten teacher was, he made an effort to learn what he could about us before meeting with me, and he was not insulted or worried when I asked for the chain of command and where to find district policy. He acts like a man with nothing to hide, and everything to share. One thing that should never be underestimated is the power of a good principal.

I'm feeling pretty good about this. I have hope.

Saturday, September 20, 2014

Goofy's Fear

There have been some strange things going on with my Goofy One lately. He started Adderall and I started seeing progress in the area of recognizing and respecting danger. It was awesome. Sort of.

We had some storms, in Missouri that's kind of expected. It happens a lot. He opened the curtains to keep an eye on the sky while he watched the weather. This is pretty normal for him. He's been watching the weather since before he was out of diapers (which was late, but still), what was a little odd is that he looked to me for reassurance. He shared his concern with me. This is progress, isn't it? I thought so.

...but then a few nights later he got onto me for smoking outside. I've smoked outside for as long as he can remember and there's never been a problem with it. The problem here is that it's dark and I'm on the back porch. He is worried that the wild animals will get me. The odd thing about this is we live in a busy part of South St Louis County. We don't have wild animals. In the 6 years that we have lived here, I think I saw a raccoon once but I can't swear that it wasn't a really big cat. We had a black snake once. Other than that... the most dangerous animal around here belongs to us.

Vicious thing. No mercy, no remorse.

But, ok. I'll just smoke on the front porch where there's a light. This one sort of worried me because honestly, even for my kid, it's weird. So I emailed his teacher and resource teacher. She said that he was doing great, she hadn't noticed any anxiety- he actually tried to calm another student who was afraid of thunder- but she would keep an eye on him.

Alright, I'm a paranoid mom. I get it. I need to relax and enjoy the fact that he is taking things seriously. He's maturing. There were little things here and there but I told myself to leave it alone.

We increased his Adderall.

Then came Dark Skies. Now, those of you who have followed us for a while know my Goofy One. He is a horror story fanatic. He loves them all. Zombies, Freddy, Jason...the scarier, the better. I guess it goes with the no fear thing. Or the youngest of 5 brothers thing. I'm not sure, but he's been interested in horror movies since he was a toddler and they have never scared him. Do you remember the flash of light I told you about? The one he woke me up for because he was scared?


Oh, yeah. Scary. Thank God, no more scary movies, maybe he can get some normal interests. (Yeah, I know. but I'M scared of these movies. They give me nightmares.)

It's all looking pretty good. I don't see a downside to this at all. Well, except that every night he comes up with reasons I shouldn't go out to smoke after dark, but that's minor.

Until he came to me in a complete and total panic that he couldn't go to the bathroom alone because there might be a poisonous spider and it might bite him and when I refused, he begged me to stand outside the door. Now that's not odd, that's terrifying. There's something wrong. There is no reason for him to even think there might be a spider and even if there was, it would never be something he needs protection from. He's the brave one. He's the one who saves me.

I messaged his pediatrician who messaged me back the next morning. He wants to know if we've moved yet because he knows where we live and that we'll be moving to the country- which would make his fears logical and a normal part of adjusting to a new home and area, when he found out we are in the same place we've always been, he told me to stop the Adderall now and we will not be starting a new medication until the anxiety symptoms are gone.

No meds until the anxiety symptoms are gone... high anxiety and unmedicated ADHD... for an undetermined amount of time... someone pass the wine, please. We're not even going to attempt this sober.

Friday, September 19, 2014

Goofy's Meeting

We had a meeting with Goofy's team one recent Monday, about 2 weeks ago. I've sort of tried writing about it, but I've been a little frustrated. It didn't start out well and went downhill from there. The way things have been going lately, that's a real shocker, right? I'm not sure if I need a better attitude or a freakin' break.

I started out mad. They were nice enough to send me the two weeks worth of collected data beforehand so I could review it before the meeting. Their collected data on his on-task behavior is total bullshit. I still stand by that statement. The day after we picked up Goofy's prescription for Adderall, I got a phone call from the pediatrician's office that I didn't pick up his prescription. I disagreed. We were confused about how she still had his prescription in her hand and she decided to shred it. A day or so later, I checked our mymercy account and saw in a message from his pediatrician that he prescribed the wrong dose based on his weight. We decided to finish the current dose and then increase to the proper dose. I didn't tell the school that part, but I did tell them repeatedly that his meds aren't working. They disagreed. I told them at the start of the meeting that their data made me angry so I didn't want to discuss it and that I was requesting a Functional Behavior Assessment no matter what their data said. They wanted to discuss it anyway.

It didn't go well.

It is really irritating when they think they hear you fall for something once and then think they'll get by with it again. In the first meeting, when they were suggesting taking data, the resource teacher told me that the Goofy One's evaluation wasn't relevant because it was from last year and this is a new year, so they have to have new stuff to look at. I was furious. I knew what she was saying was not true, but I didn't argue it because they were collecting data, which was what I wanted, so that made her stupid statement irrelevant. Remembering and anticipating that argument when I quoted the same evaluation in my formal written request for a Functional Behavior Assessment, I went ahead and let them know that I will absolutely agree to their request for re-evaluation if they disagree with the last evaluation because you know schools have the right request re-evaluation if they determine that the educational or related services needs, including improved academic achievement and functional performance, of the child warrant a reevaluation. They said it anyway. And then changed their mind. I guess they agree with his current evaluation.

You know you have the right to Prior Written Notice (a Notice of Action) any time the school proposes or refuses actions related to the identification, evaluation, or educational placement of your child AND the provision of FAPE? That includes when they are agreeing to or refusing things you ask for relating to the identification, evaluation, educational placement, or provision of FAPE for your child. Saying no is easy, when they have to explain why...they take a minute to think it over. I asked for a Notice of Action on my request for a FBA. Three times I clarified that I would be getting a notice of action and three times the man reluctantly agreed.

Then we moved on to his handwriting. In the last meeting, my suspicion was confirmed that "this is really typical for a *fill in the grade* grader" really is some sort of standard line that they hand everyone, whether it is typical or not. I think it's in their training, maybe their job contract. You know what else is standard? Blaming the parents. Whether it's for breaking the kid in the first place, or expecting "too much," or that "parents worry." That's annoying.

Absolutely typical for a second grader.
I totally see it.
In this meeting, his handwriting isn't quite as "typical" as I've been led to believe (too bad. There for a minute, I could have believed that my child was perfectly normal). This time, he needs a word processor. A fusion is what they're using. The resource teacher going to set up a meeting with a lady that does technology stuff. and now I'm even more irritated. If he's doing so much better with a word processor, that means handwriting is a real problem, as in the act of writing limits what he is capable of. His typing is much more detailed, he has a lot to say, but handwriting is silencing him. You can't just ignore that. You can read about Dysgraphia, everything says that they need accommodation, modification, and remediation. He needs remediation. They say occupational therapy is enough, I disagree. He has remedial reading, he has reading in class. He has special ed instruction in written expression, he has writing in class. How does that make only OT for handwriting instruction sufficient?

We disagree for a very long time before I rudely cut the principal off and turn to the area coordinator, "would this conversation be going differently if he actually had the dysgraphia diagnosis?" He hesitates, I'm not sure if it's at my rudeness or if he doesn't want to answer. He says no. I don't think I believe him. We disagreed about whether or not Dysgraphia is covered under Specific Learning Disability, he was saying no because IDEA specifies "written expression" while I was arguing that SLD is a disorder that may manifest itself in the imperfect ability to listen, think, speak, read, write, spell, or do mathematical calculations. The funny thing is, we were both right. Dysgraphia was a Learning Disability in the DSM-IV, In the DSM-V it's called Specific Learning Disability in the area of Written Expression. After the meeting, I put together an e-mail for him with links that explain that dysgraphia is  a disability in written expression and asked what more we could do to help him. That e-mail was ignored.

So I waited. When the resource teacher emailed me to set up the SETT meeting to discuss technology options, I asked her about the Functional Behavior Assessment. She asked the Area Coordinator. I still haven't heard back. So this morning I called and left a message for him to call me, and I still haven't heard back. I'm getting a little irritated, but I am determined- I will have a Notice of Action proposed or refused on his FBA. And, I called his psychologist. He has an appointment October 20 to be evaluated for a Specific Learning Disability. Because I guess we're starting back at the beginning.

I'm tired, man. I'm so tired of fighting. I'm so battle weary, I wondered if I had any fight left. Well, I guess I do, because here we go.
 


Thursday, September 18, 2014

Looking up

This week started out shitty, then bottomed out.

Tuesday night we had an end-of-the-world battle over homework. The Goofy Child has hit my last nerve. He screamed, he cried, he dropped to the ground over erasing, he slammed buttons on the keyboard making his spelling list and yelled at me about the unfairness of life and how freaking tired he was. Alright. Fine. Too tired for homework? Then you're too tired to play. Skip reading for 15 minutes and get to bed. I told that boy straight up, I don't care, he's not doing any of his favorite activities until homework is done.

I called the boys for night time meds...and I'll be damned if Walter didn't take the wrong ones. That makes for a rough night. Walter wakes me up Wednesday morning wanting to know if he should take Thursday morning's pills since he took Wednesday morning's the night before. Oh, Lord, thank you for waking me up for that one. Geez.

I grudgingly drag my butt out of bed late and walk in to wake Alex up...my talented artist struck again and I can see exactly what the problem is. He's too big for L/XL pull-ups and too small for XL. His pull-up fell off. No more. I bathed the kid and scrubbed and scrubbed the mess. (and later spent about an hour on the phone with the medical supply company trying to explain exactly what I meant by "diapers" in my request to change from pull-ups to diapers. Did I mean pull-ups?)

I fought with Goofy over clothing to the point that I wondered how truly awful it would be to let him wear yesterday's clothes underneath today's clothes, even if he did look like that bundled up little boy on A Christmas Story... then decided against it considering I'm already pushing my luck since I can't remember the last time soap touched his body (he says the soap will burn his "boo-boo").

I just barely get the little demons on their buses. Alex's bus driver and aide are freaking awesome. They are most definitely a couple of characters. They are having a thing with Alex's school aides over a specific Elmo teething ring. This Elmo is sacred, in their eyes. He's the only toy in the world that keeps Alex's shoes on through the whole bus ride and the school aides keep taking him. They are not happy. They keep telling me so. Alex has two Elmo's. One in the classroom and one at home. I don't know why the school aides would need Elmo. Well, today, the bus driver and aide won the battle. As soon as they got Elmo in their hands, they kept him. Didn't even give it to the school aide to convince Alex to walk down the stairs. I tell you, they are an entertaining duo.

Sunday evening we had rushed the Goofy Child to the Mercy Urgent Care center with swelling under his jaw and a (still) nasty looking scratch on his chin. They did some tests, said it wasn't strep and sent him home with an antibiotic and an antibiotic cream. Late Wednesday morning, they called me to let me know that it actually was strep which set me right into panic because I just sent my kid to school for 3 days with strep! They don't think it's a problem because if he wasn't feeling better, or he was feeling worse, he probably would have said so. Yes, I explained, and no, they are not familiar with this "sensory" thing. He has what? *Sigh* No, the Goofy One would not tell me. They said I would have noticed laying around or not eating. and we are back to this "sensory" thing. I took what they said and their medical recommendations and called the pediatrician all fired up and asking what to do since these dipshits couldn't even read a strep test. The pediatrician says it's fine, there are two tests and it's not uncommon (uhg, not uncommon. probably as in "typical.") for the first test to be negative while the second is positive. He said to do as they say, he agrees with their recommendations. He is now on two antibiotics and an antibiotic cream.

Ok, so, Wednesday's work appointments ran over which made me late getting home. As soon as Walter got home from school, I called him to ask him to please get his brothers off their buses. He told me he would and then went on to tell me that his doctor's note ran out and he's back to running in PE. Even with the arch supports, his legs are killing him and he's really worried that he has those stress fractures the doctor mentioned. I promised him that I would message the doctor and reminded him to not forget to get his brothers. We're good. At 3:40, I called and got no answer. He's been doing that and we've been fighting and I keep swearing I will take his phone but we both know that if I take his phone, I can't call him to get his brothers. Stalemate. I assumed he's rebelling and just not answering his phone to be a jerk and I swear to myself that I will threaten to take his phone when I get home. 10 minutes later, my neighbor calls. He's all hesitant because he knows I'm going to be pissed, but he says, "Hey, Mac, um, Alex's bus is here and there's no one to get him off of the bus. Is he going to freak out if I try to get him off of the bus?" God bless my neighbor.

When I get done cursing Walter, he puts me on the phone with the bus driver. Character, remember? Entertaining, ringing any bells? I explain that Walter was supposed to get Alex but he didn't and now my neighbor wants to get him and I'm asking if she can let my neighbor have him. She's very politely explaining to me that yes, she sees his brother, but she just can't leave him with a younger sibling. I told her I appreciate that, but my neighbor is going to get him for me because his brother didn't show up, can she please let my neighbor get him off of the bus? She patiently tells me that his brother is standing here, but she really can't release Alex to a younger sibling. I tell her that I understand that, the brother that was supposed to get him is the Mexican one- not the little one, she says, "Oh, yeah. that one isn't here, just the little guy." I tell her my neighbor is the adult standing there, can she please give him to the adult and I will be home soon. I swear, I could hear the woman looking my neighbor up and down as she hesitates a second before saying, "I don't know...can I trust your neighbor with him?" I had to laugh.

Turns out, Walter was sleeping. The combination of wrong pills at the wrong time and the rough night, and the hurting legs, and the running a mile was just too much for him. It reminded me that I'm expecting a child to take care of a child. I think I'm expecting a bit too much out of him, but I'm not sure what to do. I don't know that, as a single mom, I can afford to cut my hours. But I don't know that I can afford not to, either. Rock and a hard place.

Today, things are starting to look up.

After a few more calls to Prairie Farms, our local Wal-Mart will start carrying the sister's little milk cartons this weekend. WOO! Thank you all for your support in that.

After more than a few calls to school administration, advocacy groups, the state, and many lawyers, Mommy finally got a response from a guy named Andy at the school- she will be getting a copy of the sister's IEP and her records tomorrow.

I'm still figuring out what to do about moving. There was a time that I thought I could never afford to own a home as a single mother making minimum wage. After talking to a loan officer, though, I am only 40 credit points away from getting a pretty decent loan through some great programs. I have a credit card now and I've been doing some real estate browsing. I want to go home, but it's looking like some of my best options are close to Alex's Mommy. It scares me that her district is the Lindsay Lohan of Jefferson County, and dealing with them over special education has been the worst experience of my life (if you don't understand the enormity of that, go read the last few years), but it looks like they are scrambling to straighten shit out. I worry about placement options but my friend Rae has had great experiences there, so I'm not sure if I should be worried. I emailed Andy to ask about things, he told me to call him in the morning and he'd see what he can do.

I don't know yet where we will end up or what tomorrow will bring, but I'm feeling pretty good. Life is good.

Monday, September 15, 2014

A very shitty day.

Today started out to be the shittiest day. Yesterday, Walter was in trouble. I don't remember what for. There's this thing going on with my heathens. I'm all worn out and uptight, stressing about moving and such, which means I'm a mess. They pick up on that and become little monsters with temper tantrums and bad attitudes. So, Walter was in trouble, at the end of being in trouble, I toss out a half-assed "go clean something." This is a punishment I have no trouble what-so-ever following through on because it doesn't even matter. So, Walter half-assed the living room. Good enough. He cleaned something, as demanded. I'm satisfied that my parenting obligation has been fulfilled.

The Goofy One has something new going on- fear. I don't know if it's maturing or the meds he's on or what, but he has fear now. He has the kind that's considered good sense- you don't walk out in front of cars, you don't get close to wild animals, you don't sit on the back porch after dark. And then he has the other kind. He woke up in the very early hours of this morning freaking out that he saw a flash of light in the back yard. I don't know what he saw or what he thought he saw, but he was afraid. He woke me up to tell me so. I didn't appreciate that anywhere near as much as I should have because his cat has been going nuts all night long, running here and there and jumping all over the couch, so I was a little too tired to do more than kick the covers aside at the end of the couch to make room for him, and grumble at him to get in and go to sleep. Dozing back off, I did take a second to smile and think to myself, "hell, yeah. progress."

I swear, it seemed like I had barely closed my eyes before I was waken up again. One problem with our current sleeping arrangements is me and Alex are at opposite ends of the house. I can't hear him and my ex-husband closes his door so he doesn't have to hear Alex's middle of the night serenades. No one heard last night's dance party, and it looked like it was a blast. So much so that we had to rent a carpet cleaner to clean up. I'm thinking about a baby monitor.

Throughout the clean up and getting ready for school, my Goofy Child has thousands of observations. There's cat poop in the bathroom floor, he tells me. I know that can't be right because our cats don't make messes. They're good cats. Getting Alex in the bath, sure enough... cat droppings. So not cool. I'm trying to clean Alex while Goofy sits on the toilet chattering away, when Goofy starts nagging Alex for playing with his belly button. "Mom, that's why he poops so much, he's tickling his belly button. It's probably asthma." I was laughing too hard to correct him. I get Alex out and dressed while Goofy gets in.

Back in the kitchen, handing out toasted waffles, I look over and there's more cat poop in the floor! What the hell is going on!? I look up...there's a hamper blocking the door to the litter box. Well played, Walter. Well played. I'll have to remember that next time I toss out a half-assed "go clean something." I think that kid needs to learn some fear.

Friday, September 5, 2014

The Importance of Milk

 You all know I have a long, sometimes difficult history with Alex's stepmom- his Mommy. You know we haven't always gotten along (understatement), and I will be the first to admit that the woman is damned near incapable of being tactful or polite. She says what she thinks, no holds barred. When it comes to her daughter...yeah. Not that I can say much about that, I just stormed Alex's assistant principal's office this morning. Good news, by the way, now he is looking into a walking harness, too. Alex doesn't have one in his IEP yet, but he will. because he needs it. I sent him to Elaine. I love Elaine. Also, it looks like Alex's bruise may have come from sitting too close to the table. Maybe we can scoot his specially made chair back, maybe we could pad the table edge, who knows. We'll figure something out.

But, back to the story. That woman, she's all "analyze, analyze, analyze!" I swear, she can be just impossible to talk to sometimes! just ask her neighbor. Heads up, make sure the neighbor has knocked a few back before you ask (that's not going to be a hard one to time) because it's effing hilarious. (sorry, Mommy, I had to and you know it ;) ) Seriously, though, if you can come at her making sense and not tossing BS, she's pretty easy to get along with. All you need is a calm attitude and a reasonable explanation. Neither of which this school has.

I hate this school district with a passion, which you probably remember from last year. I thought once Alex's sister was unenrolled we could breathe a sigh of relief, get the girl what she needs, and start again next year with a different school. That is assuming the problem is this district and not Jefferson County. I'm telling you, when it comes to special education, I'd choose St Louis County over Jefferson County any day, but we're going home, so whatever. (Sorry, Rae, I know you love this district, but no.) But, Mommy still needs things. Why? I'm not sure, but she has reasons and she has rights. Check FERPA, check your Procedural Safeguards, check your State Compliance Plan, check your District Policy. District policy like this one labeled policy 2415...


Like I said, know your rights, because there's a good possibility your schools don't know their own policies, much less the laws protecting your children.

ok, so that's not the point in this post, but we are getting there.

We had a meeting today. It did not go well. It was a scheduled meeting, I sat there and listened to the meeting being scheduled while nodding that we could be there in time. But when Mommy asked to review the sister's records to show the principal a piece of what she was explaining, he said that what she was wanting is too time consuming and she would have to schedule a meeting. She scheduled THIS meeting! They have her chasing her tail, the principal sending her to central office, central office sending her to the principal. She schedules meetings where they tell her that that meeting can't be this meeting, it has to be a different meeting. Oh, I can see why she is fed up. I can totally see why she's losing her temper. How many meetings do you have to schedule for it to finally be the right meeting? "It's the wrong Alice!" Good Lord. So, Mommy was rude, the principal was rude, nothing was accomplished except making the already turbulent relationship worse.

and, we get to the point.

Now, you all know autism, so I'm sure you are more than familiar with food issues. If not, you can go read Bec's How To Help a Selective Eater. The woman is freaking amazing, if you aren't already following her, go do it. You can find her on Facebook here. Ok, so, the girl's biggest issue is milk.

Milk belongs in a baby bottle and only in a baby bottle. Unfortunately, Mommy had to take it away when she turned 5. I have to give Mommy some serious credit here, she has not given in on the baby bottle issue at all. Instead, she is going through hell trying to find any and every way to get dairy products into this child without giving up and getting bottles. She's working harder than anyone should have to to not give in. She's buying milk shakes or ice cream cups with a McDonald's Happy Meal, no matter how it looks to the snobby, judgmental parent in the driver's seat who's thinking, "WTH? Seriously? My kids don't get ice cream or milk shakes with every meal." Mommy takes my confused, WTH are you thinking looks and goes on because she knows this might be her only chance to get calcium into her child today. She's willing to pay extra and to look like a "bad" mom to keep her baby healthy without caving to the baby bottle. That's dedication. She's more mom than I am.

Then there came the promise of hope.

Alex's sister opens a small paper carton of milk at school...and drinks it.

Mommy talked to the principal we worked with over the summer. He said she can ask the cafeteria about purchasing milk through them. Mommy thinks on it, but calls every grocery store she can find in a 15-20 mile radius of her home. Believe me, I googled all of the numbers for her. Not one of them carry small cartons of milk in any flavor. Mommy isn't about to give up, she calls Prairie Farms. Prairie Farms tells her that this milk is a school-specific item and has to be ordered through the schools, she tells Mommy to contact her local schools. So Mommy calls the sister's school and talks to the head cafeteria lady, who is happy to help. Mommy orders 14 cartons for a week and pays the school for them.

This past week, the sister drank every bit of the milk Mommy bought through the school.

Today, after the failed meeting with the school, the principal called her. Now, he is most definitely aware of the sister's feeding issues, especially the milk. This has been an ongoing concern and the issue has had a prominent position in all of our discussions this year. However, once he heard that Mommy was buying milk from the school, he decided to call Prairie Farms. He said that Mommy is no longer allowed to purchase milk through his school, she would need to check her local grocery stores.

Low blow, man. That's not even cool.

It's funny, though. He couldn't make an in-district call to the Director of Student Services to simply ask if Mommy could have a copy of the sister's records, but he could search out and call Prairie Farms over the legitimate purchase of 14 cartons of milk per week. Good to know that even though their 120 kindergarten students make it impossible to write and implement a detailed IEP, and the overwhelming number of students they have needing services puts a necessary limit of 60 minutes on therapy (so not allowed), they make time to track their milk cartons. #Priorities

Thursday, September 4, 2014

Absurd

I think my sense of humor has become absurd.

Tuesday morning, I was happy to get my heathens ready for school. 3 days at home is more than enough for them and me. I love them, but I love them better with a break. So, I get Alex up at his usual time, shower and dress and all that fun stuff, we wait for the 7:40 alarm that lets us know the bus is coming and happy dance to the front porch, chanting "school bus, school bus, yeah, yeah, yeah!" all the way. 7:45, the bus will be here any minute. 7:50...any second. 7:55, I'm checking the school website to see if he even has school. 8:00, I'm frantically ringing the door bell to try to wake the Goofy Child up to get himself ready. 8:05, I'm calling the bus garage. I have to admit, when they told me that they called me Friday and left a message on my phone that they changed Alex's bus, I got a little snippy. There's no way in hell any phone call goes to voicemail on my phone, and I would remember that call. I call bullshit. but whatever, they say the bus is running late. Well, that's nice and all, but Goofy has 10 minutes until his bus comes and he's not even up yet. That gets them moving and they decide to check bus times. Alex's bus won't be here until 8:28. 4 minutes after Goofy's bus. Alex was not happy to be dragged back into the house, he wanted that school bus. We chanted, for the love of Pete! When his bus finally came, the way he looked at the driver, I fully expected him to refuse to get on.

Later that same day, Alex's teacher emailed me to discuss scheduling an IEP meeting. Now, you know how those two little words can freak me out. I freaked. She reassures me that she has no intention what-so-ever of changing his IEP, she just needs to update it. I'm suspicious of this "updating." What exactly does "update" mean...is that code for "change something"? So I ask for notice on anything a member of the team would like to change so it can be discussed, I asked for a copy of the draft IEP to look over before the meeting, and my usual copy to read along with in the meeting. She agreed to all of it. and she's wondering why Alex was on a different bus this morning. Huh. Me, too. We should totally start a movement for transparency in the bus garage. Picket for explanation. I would make a riot joke, but I think that would be inappropriate considering Ferguson was just like, last week. Anyway, the other bus people were frigging awesome. Well, the bus driver was. The aide didn't seem to be too capable of anything, but the bus driver more than made up for it. He walked Alex to his seat and buckled him in every day. Alex loved him. The new one gets dirty looks and stays in her seat.

Wednesday, Alex came home from school all hyped up as usual. I take his vest off, unzip his jacket and hold the back as he runs out of it, just like always. Watching the jacket peel off of his arms, inch by inch of skin being exposed as he goes, my eyes widen as I catch sight of a fresh bruise. It's not big, but that doesn't even matter. I know where this motherfucker came from and I am not happy. I told them not to hold his hands, I told them not to hold his arms. For years I've been showing them bruise after bruise that staff is leaving while trying to hold onto him. We had a plan. They didn't follow the plan! and I'm telling myself, "woman, just chill. It could be from anything." (*snort*) but I calm down...ish. I write a very polite email. Seriously, when I'm polite, it's not a good thing. I usually have to be pretty fricking irritated to be polite. By 5pm, I've got myself all worked up. I'm drafting emails and ranting in my head. I have Twisted Sister's We're Not Gonna Take It, and Three Day's Grace's Let's Start a Riot looping in my head. I'm pacing the front porch, chain smoking and cussing up a storm when I catch myself. This is ridiculous! I'm all mad and cussing at them because they might not respond to my email with an acceptable answer, when I know damned good and well they won't even get the email until morning. I sent them a whole list of things that could have happened, it could be any of those things. Just because it looks like a thumb, doesn't mean they are holding his arm to walk him. I laugh at the absurdity of my reaction.

Until 24 hours later when I still don't have any response- acceptable or not- from any of the three people I emailed. I am going to school tomorrow. and I already have a fully drafted email to Special School Administration sitting in my folder, waiting to be sent.

I'm thinking at this point that it's not so much me that's absurd. What's absurd is that school staff is refusing to use a walking harness for Alex because they worry about how it will make them look and what people will say about them more than they are worried about Alex's safety or how it looks that school staff is bruising him, hurting him, because they refuse to acknowledge that there is a need. In the eyes of administration, there should be no difference between a using a gait belt and using a walking harness other than looks and small minded people's opinions. The harness just happens to be more appropriate for Alex. Different is our way of life. What can I say? We are definitely not typical, and that's not going to change just because someone doesn't like the way it looks.

Saturday, August 30, 2014

My complicated boy.


Today we made it final, Alex's sippy cups are gone.


He is 12 years old, in the 7th grade, and a very complicated boy.

I spent a good chunk of time standing outside of his bedroom tonight, watching him. He had his bath, I took him to his room, slipped one of my t-shirts over his head and helped him work his arms into the sleeves before laying him down to put his diaper on. This after bath ritual hasn't changed since he was an infant. He giggles and kicks his legs in the air, he sucks his thumb while I fasten the tabs. I help him up and he hugs me, laughing. Just like when he was a baby. I stand outside his door and watch him lay partially on his side, partially on his belly with his knees drawn up. He's sucking his thumb and watching Disney Junior, with Elmo toys, teething rings, and rattles scattered across his bedroom floor. The same boy who refuses sippy cups, tries like hell to feed himself, doesn't like to be my baby (unless he needs it), and wants to be potty trained (believe me, we're trying) because he's a big boy.

He's done some things lately that have surprised me. I was arguing with Walter over something, and Alex jumped in the middle with his "yeah, yeah." Walter's all excited that Alex agrees with him and asks Alex for a high 5. Alex is freaking laughing while he high 5s his brother. I yelled at him that he so does not agree with his brother, he'd better get over here and give me 5. He walked over to me, still laughing, and gave me 5. That stunned me. Alex has never followed a direction more than "stand up" or "sit down." Alex has never walked over to me when I called him. ever.

which brings me to the next one. Alex now lets me know when he's dirty. He watches me line up the diaper, wipes, and bag, and then walks over to me to let me help him fall onto his back to get changed. This is amazing! It's huge progress toward potty training, not to mention the fact that he's seeing what I'm doing, recognizing the sequence and understanding what needs to be done and what his role is. My baby is not a baby, he's getting older, he's making an astounding amount of progress. I'm just amazed by him. I'm accustomed to seeing him as a complicated boy.

Age appropriate doesn't mean crap in this house. I have an 8 year old who is into weather, serial killers, and zombies; a 14 year old who is more responsible with household tasks and caring for his brothers than my 19 or 20 year olds; and a 12 year old who loves his toddler shows and infant toys. No one is more age appropriate than the other, and there's nothing wrong with any of them. Their interests are their interests, their needs are their needs. They are who they are and it has nothing at all to do with age. I've become accustomed to defiantly defending Alex's interests and needs, he's a complicated boy, ya know.

When we took Alex's sister to be evaluated, the psychiatrist was asking about family history. She was very interested in Alex, we talked about him for a few minutes before she said, "OH!" and with a complete innocence that only a mental health doctor with English as a second language can achieve, "he is retarded?"

Retarded. It's a word that goes right through me. There was a time that it didn't bother me at all, I'm sure I said it as frequently as the people around me. Then things changed and now the word hurts and tends to piss me off. When she said it, I knew exactly what she meant, Intellectual Disability, but I'm thrown by the offensiveness of the slang.

When I first started working this job, I was asked to do a favor for a roommate on my own time. I was going that way anyway, it was no big deal, but the roommate had to do something he didn't want to do to help me help him and declared it to be "fucking retarded." Oh, I was furious, this man has known Alex almost his entire life. I told him that I need him to remember that I do not work for him and I do not have to do anything for him at all. I told him that I don't mind doing things for him if he needs it, but if he wants to ask me for a personal favor, he needs to keep in mind that my son is fucking retarded. I have not heard him use the word since. I didn't have a problem whatsoever telling him, but this doctor asked in complete innocence and I hesitated. The question hurt.

Standing there, watching Alex in his bed, wrapped up in his Disney Jr, sucking his thumb, his diaper peeking out from under an oversized t-shirt, her question and his objection haunt me. His eyes slowly leave the TV, he looks at me for a few seconds- pondering me the way I'm pondering him. In his eyes, I don't see ID. I don't see the pain of his diagnosis being used as an offhanded insult. I see the studious consideration of my complicated boy, wondering what his mama is thinking. I'm thinking I have been blessed. A few weeks ago, we ran into a boy who told me he was sorry Alex was disabled. I didn't know what to say to him then, but now I do. I'm not. He's perfect. Alex is Alex, and I like him just the way he is.

Thursday, August 28, 2014

Lesson In Empathy

I've gotten to where I love the early morning hours. Sitting on the front porch with my coffee before the little ones get up for school. It's quiet and peaceful, relaxing. I was sitting out there this morning, drinking my coffee and playing Farm Heroes, when I saw our cat out of the corner of my eye. I thought, "man, that's a big cat." I looked up to find a little dog staring at me. "Well, hi there." It took a step forward, then turned to walk on. I got up and got it's attention, it wanted petted. She was wet from the grass so I brought her in to dry off, she had no collar and I wasn't sure what to do with her- we live on a busy street. Once Goofy saw the dog...


Goofy: "I want to keep the dog."
Me: "the dog wants to go home."
Goofy: "You better not get rid of him."
Me: "It's a girl."
Goofy: "It's a boy."
Me: "Honey, I'm pretty sure it's a girl."
Goofy: "I think his name is Kevin."













Ok, for today, and today only, her name is Kevin. All morning we talked about this damned dog going home. I talked to Thing2 about walking her around and seeing if she goes anywhere resembling "home." We asked neighbors. Thing2 posted a picture on Facebook.

Goofy called me from school. He got a positive referral to the office. His second time this year. (have I mentioned the unbelievable fact that school has only been in session for 10 days?) Now, you know my kids. When I get a phone call from a principal, you know what's going through my mind. For the second time now, it's been a call that his resource teacher gave him a positive referral to the principal's office for doing such a great job, it's a thing this new principal started. It's great for Goofy because he loves the attention of adults but every time I hear "Goofy got a positive referral!" what I'm actually hearing is "HAHA, fooled you! and you were afraid he set the bathroom on fire, haha!" You remember the story of the boy who cried wolf? Yeah, I'm wondering if his dad might want to take the happy calls... he's good at that sort of thing. With me, it's more like, "is the dog still there? Are we keeping him? But I want to keep him. Well, what about just for one night? Well, is he going to be there when I get home?"

Walter called me when we got home, wanting to know what was in his room. "Does it have 4 legs? It's called a dog. Your bother named her Kevin. Say hi to Kevin." "Hi, Kevin. Are we keeping him?" "HER! It's a fucking GIRL!" "I think it's a boy." "Do you need me to explain this to you? Ok...flip it over..." "MOM! I know about the penis and vagina!" "Ok, then it's a girl and no. She wants to go home. Go find her home." When I get home, neither Thing2 or Walter took Kevin to find her home. So, I forced the issue.

She refused. Standing in the front yard, trying to shoo the dog away while she's safely tethered to Walter, the freaking bus passes. There went that chance. Goofy will be pissed when he finds out I tried to run his dog off. So, she goes back in to hang out on the couch with Walter.

I get a note from Goofy's OT, "Goofy came in with increased energy. He was not able to focus, so we started with sensory- (proprioception) knee push-ups. Placed cushion in chair and weighted dog on lap, still having a hard time. Discussed his feelings- he was upset because "mom took the dog to the pound"..." I didn't take the fucking dog to the pound.

Getting Alex off of the bus, I call the humane society. I say Kevin looks like a fat Chihuahua, she asks if it could be a Boston Terrier. Maybe... She says I can take it to the vet to see if she has a chip. I can contact the owner that way.


Kevin likes car rides :) we go around the corner to the vet's office and as soon as we walk in the door, Goofy looses all interest in Kevin. There are dogs and cats all over the place, and one specific kitten he's dying to get his hands on. For 40 minutes of waiting on Kevin's owner, I'm reminding Goofy over and over that he has to ask before he touches someone else's animal. He was in freaking heaven. I'm sitting there, watching my kid not pay a single bit of attention to Kevin as he whores around indiscriminately with all of the other animals, watching the clock because I really need to get home, and wondering how in the hell someone could be soooo worried about their pet that it takes them 40 frickin minutes to take less than a 10 minute drive!? At 45 minutes, the woman offers to take the dog for me to keep there until the owner shows up, I gave her my phone number in case they didn't. We're walking out the door, Goofy flipping out that we're leaving Kevin, getting in our car, Goofy obsessing, when the old man from across the street, the one who lost his wife last year climbs slowly and shakily out of his car.

Kevin is usually called Sassy. She was lost 3 days ago when the lawn maintenance people left his gate open. He has been worried and missing her. He's glad to have her back.

Goofy's not glad. He's heartbroken. He doesn't understand why he can't have Kevin. I explain to him that Kevin belongs to the old man. The old man was very sad when he lost her, and Kevin was very sad when she couldn't find her person. I explained that they were happy to be back together because they love each other. After a whole conversation, Goofy had just one question left, "Well, can I have him when the man dies?"

So, I wrote the OT back, "I did not take the dog to the pound. It was not our dog, it just wandered into our yard. I told Goofy repeatedly that we could not keep someone else's dog. She was returned to her owner this evening. Goofy is still upset. Where can we get a weighted dog?" We'll call the damned thing Kevin.

Wednesday, August 27, 2014

Goofy's curriculum night and homework

Goofy got lucky with another gen-ed teacher this year. The old teacher and principal did an awesome job picking her out. I think I may have upset her at our team meting, which tends to happen... I don't remember what it was, just that she looked upset. Maybe when I insisted that extra help in hand writing was more important than academics or when I asked why he needed two writing classes, I'm not sure. To explain, he's missing RtI because of instruction in written expression, but he's still getting writing in class. Having both doesn't make sense to me when there's a weakness he could be getting help with in that time frame. Their answer wasn't satisfying, but I'm content to collect data on an alternative before RtI starts up. If letting him use technology eliminates the problem, I'm thrilled. Ok, so... she was over it by last night, so *woo* for thick skin.

Last night was curriculum night. There were two sessions, one from 6:30-6:55 and one from 7:00-7:25. We went to the second one so I could have the kids ready for bed and Walter didn't have to do much. The parking lot was packed (they could allow more time for people to leave before the next shift comes in), so I was surprised to see only 2 other kids' parents in our class and lots of packets still sitting at the kids' desks. Curriculum night is an important night, in my opinion.

I didn't realize how much things would change going from first to second grade until I was listening to her go through their day and tell us what the kids do in each subject and what to expect at home. There were casual accommodations we had set up with last year's teacher for Goofy's troubles that I didn't think about possibly changing or being unknown.

This year's teacher is allowing him to type his spelling words to practice them. If handwriting is going to be so much harder, he may as well type them out. He's still studying them.

Last year, he had reading homework every night but it was just as good to read to him as to have him read to me. We shared. Sometimes I read, sometimes he did. At home he reads on a lower level than he does at school. He seems to be more willing to work hard at school, but if he's reading to me, a higher level will bring him to tears. I'm not trying to teach him to read, I'm trying to reinforce and continue practicing what they are teaching at school. At the end of last year he was reading a level J at school, but only D-E (very few F) at home. This was fine. I was able to ask his teacher about it and she has the same thoughts, it's fine. Trade off on reading as needed, lower levels are fine. Nine days into the school year, he's bringing me a level H book to read to me!

They have study guides for Science and Social Studies tests. They fill them out as a group and then bring them home to study for the test. She said if we are concerned that they may not have the right answers, we can let her know and she can send home a study guide key. This is freaking fabulous. Not that he'd have the wrong answers, I just wouldn't be able to read them.

Last year, it was understood that I read his homework to him. Math word problems, social studies questions, science worksheets...I read the question, he writes the answer. This is fine. and actually, I could read it and write the answer he gives me for him, I would just need to make a note that his answers were oral. I don't know that I'm comfortable with that. Usually he writes the answer and if it can't be read, I write the answer in cursive beside his because he can't read what I'm writing and has no idea that I'm translating his answer. That worked last year. This year he's starting to get mad and demanding to know what it says. I don't know how much longer that will work or how he would feel knowing what I'm doing. That makes me nervous.

This year, they also have snack. Goofy's going to love that. He's constantly stealing food from his tray at breakfast and lunch to save for later. I still can't get him to understand that he cannot save chocolate milk in his backpack all day, and an apple does not make your backpack smell good after a few days of being in there. The most recent was a bottle of water. Between his not paying attention and his fine motor skills sucking, the once half full water bottle ended up upside down- ruining his daily planner and OT log, and making homework a pain. When I heard about snack, I went and got him a bag to hook onto his backpack to carry snack and water in. No more drippy papers :)



Homework is suddenly a big fight with my Goofy One. He's crying a lot, refusing to work, and throwing temper tantrums. He's insisting I do the work for him and that he doesn't know how to do it. I don't really know what the problem is. He has time to come in and calm down after school, he eats supper, and then it's homework. This was working last year when doing it right after school became a huge problem, but this year waiting seems even worse. He cries all the way through, not just when it's time to get started. The homework is exactly the same as last year, nothing has changed. Aside from duct tape and holy water, I don't suppose you have any suggestions?

Tuesday, August 26, 2014

IEP meeting #FAIL

Today was the sister's IEP meeting. It did not go as expected. I am lucky enough to have polite staff in our schools. They always say hi as they are passing through. If they recognize you, they might ask how your child is doing or give you a small piece of information. I love our waiting area. I also like that if you get there early enough (10-15 minutes), they are nice enough to not leave you sitting there and seat you in the conference room as soon as it is empty, which means you are the first people in there. These are my favorite parts. You can ask questions and get a feel for how things are going for your child with them in an informal setting, before the IEP mood hits the table. It helps me relax with the team as well as sharing final bits of information. I asked Alex's mommy if we could get there early for this exact reason. She was happy to. Thought it would be a great idea. and then we sat in the office until 11:00 on the dot when the principal came to escort us to the room, walking far ahead, not checking to see if we were with him and barely saying a word. We walked into the tiny room to see the entire team (minus the teacher) sitting there all set up, severely professional looking and ready to get down to business. You can guess where it went from there.

I thought I was pretty careful in how I put the list of requests together. I started with the ones that were definitely going to be agreed to and put the big-ticket items at the end. That way, mommy would hear all kinds of yeses and/or alternative ideas before getting into the tense parts. I thought by the end, we could have enough in place that the tense parts wouldn't be as devastating, maybe she could see how it might work and how they are trying to work with her instead of completely ignoring everything she had to say. Maybe she could feel comfortable enough with the team listening to her and acknowledging her concerns to be able to see their points when they did disagree, or maybe by then they would see that she had enough valid concerns to warrant looking into at least one of them. We went out of order. In the end, it was just barely looking almost promising before the shit hit the fan.

There are some things that professionals just can't say to parents. There are trigger words or phrases that will just shut the whole conversation down or turn it into a bar room brawl (this one was more #2). Not everything is a parenting issue. period. Our children are not "normal" or "typical" and we just don't care what a stranger walking into our child's classroom would think any more than we care what they think at Wal-Mart or the pizza place. Not all disabilities are visible. Don't trivialize our children's disabilities to reassure us that they aren't "that bad." We need straight truth. At least acknowledge that our child does have difficulties in certain areas relating to their disabilities (I would like to take a second to thank my Goofy One's area coordinator for stopping the conversation just to reassure us that just because people were saying he's doing better in certain areas, it doesn't mean that he's not still struggling. Thank you.) and compare their progress to their own. I don't care what a typically developing kid in your class is doing. Would you compare your typically developing student to a delayed student in your class while talking to their parent? "My autistic kid screams just like James. We don't think a thing of it. The kids are used to it." Would you tell the parent of a typically developing student that when he is seated in a class of special needs children that a stranger walking into the class wouldn't be able to tell which one is typical? Why would you think it's ok to say it to us? My kid is not broken, I couldn't give a shit less if he can pass for normal.

#Perfect. Both of them.
 
Parents, for the love of Pete, don't piss off the whole team. You need at least one friend. You need to be informed. Know your child. Know their disability. Know your concerns. Know your rights. Know your options. If you don't know, find out. Ask questions. If you don't trust the team to tell you, ask someone else. You can check with Wrightslaw MPACT, The Regional Center, Touchpoint, Missouri's DESE, The SSD... they ALL have great information. If you're not in Missouri, I'm sure your state has similar sites and programs. You have to know what you are asking for and how to get it before you even walk into that room, that involves being in control of your emotions, even when you disagree. Read Wrightslaw: from emotions to advocacy.

So, that meeting didn't go well. The sister is no longer enrolled in school. We'll do what we can do and try again next year.

Monday, August 25, 2014

Discouraged

We had two meetings today. I think I swore one day in the not too distant past that I would never do that again. Someday I will learn to listen to myself.

I've been working with Alex's stepmom, trying to help her learn how to ask for things and work as a team. She is a passionate woman, especially when it comes to her daughter. I can't say that's a bad thing, but I can say it's exhausting.

The doctor gave Alex's sister new diagnoses and gave Mommy a few suggestions on how the school can make adjustments to help the girl. Mommy read up on the diagnoses and read some sites she found in a book I loaned her and came up with a list of things she would like changed/added to the sister's IEP. Sunday I went to help her draft reasonable arguments for each one. Well, except one. There was one request that I could not think of a single reason it would be appropriate if the rest of them were added. It's not my kid, not my decision, not my business, so I gave it hell. Every compromise, every idea on how to work it in, every suggestion was shot down and Mommy ended up writing it herself when I exhausted all possible arguments.

I left there feeling like all of those hours were wasted. Every ounce of effort I put in was useless because this one item could send the entire book I just wrote to the trash can.

Last week I got 3 phone calls on my Goofy One. After the third call, I said I was one "great kid, you should be proud" phone call away from sending the kid in unmedicated. It was a joke. for about 30 seconds. then a light bulb flashed. You know, I bet they have no clue if his meds are working because they have never seen him unmedicated or properly medicated. I'm not sure if they are reporting honestly because you know how professionals love to reassure the parents, but maybe they just don't know...only one way to find out.

I headed into the sister's meeting this morning fully expecting to be interrupted. I warned Mommy ahead of time that I was expecting a phone call I couldn't refuse any minute. She was cool with that. The sister's principal wasn't in. There wasn't much help without him. We discussed things with the assistant principal and left with a promise that the principal would be calling to set up a meeting.

I'm not the only one who left there feeling discouraged. For all the talking, nothing was settled and the situation does not look too promising. She decided not to go to Goofy's meeting because there's no point, nothing she can learn. She doesn't know anything, the school doesn't know anything, the psychiatrist doesn't know anything...the girl is screwed. I tried not to agree with the sentiment. at least, not out loud.

Alex's record keeper called to let me know his records were ready. The file is too thick to mail, so she's hoping I can pick them up.

I headed into Goofy's meeting pretty pissed off that, apparently, they didn't notice that he's unmedicated because no one ever called, which tells me that they've been blowing smoke up my ass about how great he's doing. ...but the weight of hopelessness tempers my instinctive reaction. The things on my list are things I would have fought over, tooth and nail, last year but today...what's the point?

They thought something was up today. He had a pretty rough day. They had no idea it was his medication. They had some good ideas on how to collect informal data over the next two weeks so we can meet again to discuss whether or not there's a need for the things I'm asking for. They will be collecting data on on-task behavior in the classroom, resource room, and in remedial reading. This will tell us if there is a reason to do an FBA, if his medication is working, and if we need to consider a change in placement. I like this. a lot. I really appreciate the opportunity to gather more information to see if there is a need instead of just jumping into a fight that may not need to be fought.

RtI would have been my hot button. Today, it just makes me sad. I fought for this IEP. I fought hard. and in the end, where we stand today, he was getting more help through his 504 than he is through his IEP. That didn't turn out at all like I planned. Was the entire year a wasted effort? Would he have been better off if I had just left it alone? The RtI issue isn't quite settled, from what I understand. He will be typing some of his work for the next two weeks. That work will be compared to the classroom work to see if his trouble is in getting his thoughts down on paper or writing his thoughts down on paper. That will help decide which one he needs more help in.

Leaving the meeting, I get an updated copy of an old paper. Teacher notes. Again, for the second year in a row, "home concerns." motherfucker. really? What did I do now? I kinda want to laugh. If they had concerns when I was a Stay At Home Mom with my sole focus being my demon spawn, they ought to get a load of me now. I can only imagine the notes this next teacher will be leaving.

So far, I'm not in any way rocking this day. fuck it.

We finally make it to get Alex's records. Alex is in the 7th grade, his file is a good 5-6 inches thick. Looking back over the years, seeing the places we've been the things we've tried, looking at where we are now... the ups and downs, progress and regression, the dance of one step forward and two steps back, gaining skills and losing others... looking at 9 years of IEPs and amendments, diagnostic reports, evaluations, progress reports, state testing, teacher notes, therapist notes, services that have come and gone, notices of actions proposed and refused... 9 years of work, and we're back at the beginning. Every year. 9 years of what? and we still have 9 to go. and after that? then what? What are we working for?

Today I'm wondering if anything I've done has made a damned bit of difference. Am I actually making a difference for my kids or just keeping myself busy? I'm not sure, but the answer needs to come quick. We have an IEP meeting at 11am.

Friday, August 22, 2014

She's autistic.

Alex's sister is not adjusting well to school, and that is an understatement. She stopped eating, she sleeps even less, she cries almost nonstop. The words "school" or "bus" are enough to bring on a soul wrenching scream and tears that just won't stop. She begs to stay home, she begs for her Mommy. To try to help her through the week, Mommy planned a slumber party and sent me to the store for coloring books. The sister doesn't want Mommy to leave the house with or without her. She wants to be home with her Mommy. Mostly in her lap, crying. I found 4 identical Frozen books, which we knew would be a big hit because the sister is obsessed with Frozen. She worked hard and planned a perfect sleepover party for 4 little girls.

Then she found out that one very important girl would not be able to be there. The mother is very sorry, but she doesn't know how she would explain to her daughters that only the younger girl can go because the older girl is never invited anywhere. She doesn't get invited to parties, or sleepovers, or play dates. She doesn't get invitations from classmates or neighborhood children because she is different, socializing and making friends is hard for her. She's autistic.

I was sent back to the store for one more coloring book with markers. Walking through the store, I had tears in my eyes as I thought of this little girl and thought about my boys. Different, Not Less. It's a lonely cry. You can become so immersed in the special needs world- the therapy waiting rooms, the specialists' waiting rooms, the play groups, the support groups, the online groups, the pages, the blogs, the life...special needs parenting and culture can become such a large part of your life that you forget how hard it is for our children outside of the bubble we create. It's a hard truth. The girl got a Frozen coloring book exactly the same as the rest of the girls. When she shows up, she will know that she is there because she is wanted, she is invited in addition to but completely separate from her sister.

I hadn't been back at the house long before it was time to take the sister to her specialist appointment. Today she got her diagnosis. She's autistic.



I want to jump right into making Mommy a list of places we need to call and appointments we need to make to get the sister the help she needs. I want to hand her the arguments she needs for services, and the key words for getting help through school...but I'm stuck in the emotion of it right now.

I remember the punch in the chest that came with the words, "have you ever considered autism?" I remember begging for help. I remember the hope and the hopelessness that came with the diagnosis. I remember starting this blog/page about 3 years ago and being desperate for someone to tell me that it would be ok. I remember looking for anyone older than Alex who could tell me that there is hope, that it gets better, that it gets easier, that it won't be like this forever...and not finding anyone who could promise me that.

I remember finding my own answers and realizing that it's a journey that you have to take for yourself. No one else can give the answers, but there are plenty willing to give you a shoulder.

I think about my boys and I think about these girls and I just don't know what tomorrow will bring. I can only hope that there will be invitations.

Wednesday, August 20, 2014

Alex

Over the summer, on Goofy's birthday, actually, Alex broke his pinky finger. It was awful. I am not describing what happened, but I can tell you he tripped over his own feet and it's something I will never be able to scrub from my brain. This poor baby, if anything bad happens, it's usually to this one. We walked right straight through the house to the van and went to the emergency room in our pajamas. That means me in my tweety bird shorts and him in his t-shirt and diaper. Good thing I keep some of his clothes in my car.


After going through hell with x-rays, he was so mad when they put the temporary cast on his arm.


But he was fine once we got home.


We had a little bit of trouble finding an orthopedic surgeon who accepts Medicaid, but found them in Cardinal Glennon's offices at St. Anthony's. Goofy requested a green cast and he was mad when Alex came home with the color Dad picked out.



It was a pretty bad break that required surgery and possible pins. He did great... the medication made him loopy.






and the hospital staff were nice enough to send him home to wake up. That made a big difference.

























And, Goofy got his green cast.

Alex slept clear through to the next day, nice and comfortable in his own bed.



Many hilarious moments came from this, like when Alex could no longer have baths (not hilarious for me or Alex, considering he's a bath tub junkie) and I was working too far from home to come back and change Alex's diaper, Walter had to shower him for the first time ever. I was at the Walgreen's drive thru when I got the phone call. I had Walter on the phone, trying to talk to the cashier and walk Walter through a shower- step by step, as if the boy hasn't been washing his own ass for going on 10 years- Walter is panicking, not wanting to wash Alex's downstairs area. I told him to get rubber gloves and where to find them, and I'm describing in detail how to put soap on a rag and all of that, when Alex's step-mom takes pity on me and takes the phone. She's reassuring him that he's doing a great job while I pick up prescriptions, when I hear freaking out followed by "it's ok, calm down. No, you are not doing anything wrong, just pretend he's a baby. Babies laugh like that." I got my phone back, and tried to hold my laughter back as I finished talking him through while we moved on to our next stop. I got a much needed laugh and Walter got an extra $20 that day.

Later in the summer, I was concerned about one of Alex's toes. His feet have an odd shape and I was worried that it was messing up one of his toes. I took him to the pediatrician, who said that his toe was fine, but he was concerned about the range of motion in his ankles. He wanted him evaluated for AFOs.

There has been an ongoing thing with AFOs. He had them when he was 5, they were giving him blisters or something and the AFO lady said the issue was cosmetic and he didn't need them anymore. so, ok, problem solved. Then when he started at his special school, the physical therapist was not happy about that and insisted he needed AFOs. She did an evaluation and said he was fine. Now the pediatrician wants AFOs and I'm all *shrugs* whatever. Send me a referral, we'll go be evaluated. Then I get a call to set up the appointment. I am instructed to bring a $150.00 deposit. I laughed and refused. She said Medicaid does not cover AFOs, so it's going to be a $150.00 deposit. If I had a $150.00 deposit, he wouldn't be on Medicaid. No, thank you. I emailed the pediatrician, who told me to ask Alex's broken pinky team what they thought.

That appointment was yesterday. At the start of the appointment, I was asked what my recent concerns are for him to need the AFOs. I have no concerns, I thought it was cosmetic. After a couple of exams and several trips up and down the hall barefoot, Alex's range of motion is fine, his toe is a little concerning- we're going to have to watch it. He needs properly fitting shoes and good socks because of a callus on the top of his toe, and the shape of his feet might be a problem. The shape of his feet make AFOs a bad idea. The way his feet curve, he would try to adjust for the AFOs, which would make his ankles turn out and cause him to have even more difficulty walking. The shape of his foot alone would cause problems with his ability to walk, so she thinks they should keep an eye on it. Funny how a change in wording changes your view on "concerns." She asked if I had any concerns with his ability to walk. Well, I don't know, he was running through the yard, tripped over his feet and broke his finger- that might be a little concerning. We now have yearly appointments for his feet, and his finger is fine.