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.

Saturday, August 16, 2014

Unrest

This has been a long, hard week and I am not in the best of moods.

Monday was Alex's first day of school. He has new staff. A new principal (yeah, I'm heartbroken), a new teacher... we had meetings and get-togethers and conversations where we revisited the same old hot topics we tackled last year. We had everything sort of temporarily settled by the first day of school. He was excited. I was satisfied. sort of. temporarily. He has both of his aides from last year to start with. This is BIG. Getting to this point was exhausting. I was confident in the first day plan and that Alex would be fine so I didn't take him the first morning, I sent him on the bus. With a new bus driver and aide. Alex is supposed to get off of the bus at 3:45-4:00. He wasn't. I figured it was the first day, they'd be late. 4:15 he wasn't here. I eventually got a call from the bus garage, they apologized for taking so long to call me but there was an incident on the bus with a couple of students and staff had to intervene. They needed to take a student home first so they would be late. 4:30. 4:45. I called the bus garage back to get an update, he said they were about 8 minutes away. Several minutes later, he calls back to tell me that the bus was in front of my house, waiting. I looked around me- make sure I'm at the right house, I looked up and down the street- squinting, searching for a bus... oh, shit. "Then they must be at the wrong house because I am standing in front of my house and there is no bus anywhere on my street!" I'm freaking, man. He's an hour late and now they don't even know where he lives! HE'S NONVERBAL! I'm telling you, it was fucking scary. Luckily, the bus was not lost, they just called ahead so I would be ready. My baby came home safe and in one piece. No marks, no bruises, no crying. He had a good day, he only dropped once. This year is looking promising.

Tuesday came and I had to take Alex's grandpa to the VA for an appointment. Let me tell you, I have been in plenty of hospitals but I have never been in one that I was afraid to touch anything. Until this one. We had to go to the basement for his appointment and he left his water in the car. He was desperate so he stopped at the water fountain across from the elevators for a quick drink. He bent down and turned the water on. Next thing I know, he's sputtering and wiping out the inside of his mouth. I'm looking at him like he's lost his mind when he explains, "that's nice. Turn on the water and a cockroach crawls out of the drain." I'm telling you, as soon as I saw it, I did a crazy lady dance, threw my arms in the air, screamed like a little girl, then started cursing. A man walking down the hall looked at me like I was insane, I said, "It's BIG!" He looked over at the water fountain, jumped away and cursed right along with me. That thing was about 3 inches long and an inch to an inch and a half wide! After that, I was checking behind door handles before I opened them and standing in the middle of the floor, watching for an attack. It was awful. Every single patient there has served our country, and they can't even clean up the dirt (seriously. Next time I'll get a picture of the corners of the floor for you. Don't even try to use the restrooms.) or call an exterminator. I wonder if the roaches are crawling on surgical instruments... ew. Alex came home on time, he dropped 8 times and eloped twice. I'm nervous. (8 and 2 are still awesome numbers, but it's higher than my goal.)

Wednesday. I told you about Wednesday. Thursday was the boys' first day of school. Both boys were up and ready by 5:15. Yes, AM. By 5:30, the cuteness of them being so "eager" wore off. I spent the next 3 hours trying to keep the Goofy One clean and wondering how in the hell his teacher was going to survive the day. His meds aren't working and there's nothing I can do about it until the weekend. I worried. All day I waited for emails and phone calls, I checked and double checked frequently... no new email, no missed call. I checked my notification settings, adjusted my volume, changed my ring tones... and didn't get a single one. Goofy brought home a green. I talked to his teacher beforehand and we decided to keep his behavior system the color coded one he's already used to because he's very visual, he already knows the system, and it has an easy/clear goal. She wrote in his planner that he had a really good day. Goofy says different. He says he doesn't like school and he's not going back. He says the neighbor girl tried to push him out of the bus seat, kids called him a moron in music and pushed him at lunch. Awesome. How much is true, how much is lie, how much is misunderstanding?

Friday, thank God for Friday. You'd think, right? Oh, man. Friday, I had to be at work early because there was a 9am appointment that could not be missed. Goofy was pissed. He refused to go to the neighbor's house because it's not fair that I put Alex on the bus and not him. He's just not going. He even tried to fake sick for about a minute. He went. I get to my client's house, the appointment isn't until 1, they remembered it wrong. Then, we had to pick up prescriptions on the way to the appointment, so we had to leave early. I heard my phone ding on 141, but I'm not reading emails or tweets while I'm driving. Going down 55, my phone rings. It's an automated call from Alex's school. Due to "recent events in the media" the school is releasing early. Buses will begin arriving at the school at 12:30. I flipped out.

This week, on top of what I've told you, I've been with Alex's step-mom dealing with the sister's school, talking to Alex's school, Goofy's school, their future school, Walter started Prozac so he's a total bitch (the doctor says it's ok, give it 3 weeks), plus working, plus taking care of the kids and house. It's been busy, I haven't watched the news, I haven't seen what's on Facebook, I haven't read Tweets, I'm completely out of the loop. I heard bits and pieces of what's going on in Ferguson from eavesdropping on passing conversations. The first I really heard was sitting in the ENT waiting room at the VA, listening to the governor and president make speeches and even that was interrupted. "Recent events in the media" geez. They things I thought in those few seconds... quickly followed by panic because I can't get to Alex. I'm working. I have no clue what's going on, what situation he's in, and no way to get to him. Nightmare come true. I'm calling my ex-husband, calling my sons, making a list of who I could possibly call whether they knew how to take care of him or not- I was desperate. I finally got Thing2. He was walking home from work and thought he might be able to beat Alex home. We have another stray and Thing2 was going to call him to see if he could get Alex if Alex got home first. Then Alex's teacher called to get verbal confirmation that someone would get Alex off of the bus. I'm still freaking with no clue what's happening and she says "due to recent events in the media" and "precautionary" and I'm ready to freaking cry. I don't know what's been in the media! I haven't watched TV, I haven't read an article, I've been busy! She says it has to do with Ferguson and I am so relieved. Alex's school district covers 22 school districts in St. Louis County. Including Ferguson.

I get the message that Alex is home with Thing2, safe and sound. I can breathe. We are headed home when my phone rings again. Goofy has a new resource teacher, a new teacher, a new principal... we have had thousands of emails, some of them sarcastic and snarky, but mostly trying to work together (this new principal is going to be fun. :/) and we're going to have a team meeting. She's calling to try to set a date and to see if one of the big guys can be excused if he can't make this meeting. I need one freaking piece of paper from this man, and I really don't know why he'd be coming, it's just a team meeting, but whatever. If he shows up, I'll ask again for the piece of paper, if he doesn't, ok. So, we're talking and I mention that one of my concerns is the way his schedule is arranged. He has OT in the morning (his best medicated time) which tends to get him excited and hyper. He has resource in the afternoon when the meds are wearing off. We're talking about it, and she tells me that both she and the teacher are happy with the current schedule because she gets him after specials, and since it's in the RtI block, he's not missing any instructional time. O.O  He has RtI. He's missing RtI. Then she says something that makes me smile. "he has RtI? But it's not in his IEP."

No, it's not. RtI is a school-wide intervention. RtI is a fluid program, with kids changing tiers and programs frequently with assessments. The IEP is locked in until a new IEP is written by the team. I don't want to have an IEP meeting every six weeks, it's hard enough once a year, but if RtI is in the IEP, they have a legal obligation to follow it as it is written, which completely contradicts the purpose and process of RtI. RtI is separate and does not belong in the IEP.

So now we have a problem. Goofy had:
a 504 with many accommodations,
60 minutes per week of private OT,
30 minutes per day of remedial reading,
and 90 minutes per week of RtI for handwriting (letter formation, grounding letters, letter size, spacing...)
- those interventions did not work.

Now he has:
an IEP with many accommodations,
60 minutes per week of school OT,
30 minutes per day of remedial reading,
120 minutes per week of instruction in written expression (capitalization, punctuation, sentence structure),
and 30 minutes per week of instruction in task related behavior.
- that's not going to work. She said we will discuss it. Monday, August 25 at 12:55pm.

By the time Friday night came around, I crashed. I ended up spending hours on the couch watching Monk while the kids ran wild. Now that I have recovered enough to think or feel, I am in a state of unrest.

Wednesday, August 13, 2014

Goofy.

Now, usually, when you want to tell a story, you start at the beginning and go until you're done. For the past few weeks, I've been trying. That's not going well. There's a lot to say but I don't even know where to start. Instead, I guess I'll just jump in where we are so I can get something posted and get back into the online world.


Hi. How are you all? I've missed you this summer.


It's 8pm on a school night. I would like to say that things are going wonderfully and we are happy to have our school year routines back... but, no. The Goofy One is screaming and crying that he has no TV. Walter is stalking me, I haven't found out yet what he wants. Alex is stimming at his door because Goofy won't be quiet, and I am sitting on my "new bed" waiting for it to calm down while I talk to you.


Over the summer, I spent my nights in the Goofy One's room, trying to remember not to hit my head on top bunk when my alarm went off. As August got going and the First Day of School date got closer, I realized I had an even bigger problem- sleep issues. The Goofy One never sleeps. Well, it seems that way, anyway. I can't tell you how many 3-5AMs I've seen. To help him sleep, he has dark curtains over his windows (not that it really works, but a woman needs hope). I have the opposite problem, I can't ever wake up. And that's when I moved to the couch. I think I like it here. The Goofy One, on the other hand, is not so pleased. As we speak, he's screaming that he doesn't like his room anymore, he wants the other couch. I'm pretty sure his entire plan is to never let me sleep again so I say hell no. I'm ignoring his pitiful cries.


I've been spending a lot of time with Alex's step-mom and sister this summer, and so has Goofy. He's learned to beg for toys on every trip to the store, he's learned whining without words, and he's learned to scream really loud when someone makes him mad. We've had a very productive summer, you see, and now it's time for school to start.


I've been talking to people over the past week or two. Trying to get things settled with the kids and find out what the hell I'm supposed to be doing. Informing people on my boys' complete lack of progress due to being practically motherless these past several months. Did I mention I got a job? Lord of the Flies doesn't even begin to cover it. To be fair, Alex wasn't my fault. He broke his finger. That cut out all of his self care goals. But, he's rocking communication! Anyway, so the Goofy One, his occupational therapist sent me a very sweet message inviting me to let her know if I've found anything sensory-wise that worked over the summer or to let her know the places we've struggled. That's going to be fun.


When the pediatrician read Goofy's evaluation results last year, he was like, "his medication isn't working." and I was like, "yes it is. They said he's great in school." and then summer started, and I'm messaging the pediatrician, "his meds are not working at all. FIX. IT." and the pediatrician gave us new ones, and I was like, "whew. so much better." and two weeks later, we're looking at Adderall  because there's no way I'm setting this demon loose on unsuspecting teachers.


As far as his behavior goes... I'm just trying to keep the kid contained and the house standing. That's serious. Yesterday morning, he woke me up at 5am. Fine, you know? I yell at him to go back to his room. He can stay awake, I don't care, just do it quietly somewhere else. He runs off, the front door opens and closes, I jump up, the back door opens and closes, I go yell at him that he is not ever allowed to be outside while people are sleeping and take him to his room to watch TV (Bless Alex for being a good sleeper) while I try to wake up. I step out front to smoke, his effing window is wide open! I'm thinking we might need something a little stronger than Melatonin. and Xanax for mama.


I just don't know. I'm at a loss here. We have a team meeting tentatively scheduled for next Thursday. I have no clue what I'm going to tell them.