Tuesday, December 31, 2013

Changing the Song

I was talking to a friend last night about her children, I don't remember what we were talking about specifically, but The Look came up. Ah, it was potty training. The Look over how long you allow your child to soil their pants when any self-respecting, actively involved parent would have already taught their child to use the toilet.

I remember those days. The days long ago when, in the eyes of the world, Alex was just a naughty child who needed a firm hand.

I know how infuriating The Look can be but I just had to laugh. I've been many places in our 11 years of living the autism life, learned a few things along the way. One of the things I learned is that, for some, The Look doesn't last. A man I read frequently and admire more than most wrote a post I just had to go get for her. It's called The Day the Music Died. He explains it wonderfully, how maddening it is to hear "all kids do that,"


...until you stop hearing it.

And then you miss it. When it becomes more and more obvious that your kid "isn't quite right," they stop judging you as a pathetic and lazy parent with a little monster on your hands and it becomes more and more obvious that this isn't going to go away and it becomes more and more obvious that your child will never be "normal." Each time that no one says the words, each time you don't get The Look, leaves this void where the words or the judgment should be and knowledge of what is vs. what could have been fills that space until your heart wants to shatter along with all of the broken dreams and crumpled hopes that used to be your child's future. You understand that they see what you have always known- no, all kids don't do this. No, it's not bad parenting. The silence is worse.


...until the day you stop hearing it.

Saturday night, Alex ran wild with his brother in the store. Well, as wild as one can be with constant supervision, within arm's reach, and wearing a seatbelt. Standing at the counter, my husband checking out, a line lining up, I'm talking to Alex, "Did you run off with your brother!?" "Did you go without me!?" "Did you cause trouble!?" "Was it fun!?" With each excited question, Alex got more and more excited, kicking his feet in his stroller, a huge smile on his face and excited squeals and happy giggles responding to me. I looked up from talking to him and I saw a new look. Not one of judgment, not one of pity... it wasn't a look of understanding or tolerance, I don't know that I can give her look a word but she saw him. not the naughty child, not the poor disabled kid. She saw Alex as he is and she was happy to see him happy. She seemed pleased to share his joy just for a few moments, no matter how unconventional the reason for it. Different, not less.


...maybe that's what acceptance looks like.

Monday, December 30, 2013

Blogger Drama- Leave me out of it.

For those of you who are there, this may not come as a surprise but there is an awful lot of drama in the world of bloggers. For the most part, I couldn't care less. I will look at you being a jerk or a dumbass, shake my head and walk on because there is not a person on this Earth who hasn't said or done something worthy of head shaking. Myself being at the front of that line on a regular basis. I sit here and listen to the bullshit, the hypocrisy, the judgmental attitudes, the assumptions that there is only one way to think or believe or to speak and that any difference makes the different the enemy- there is no room for education, explanation, discussion or agree to disagree, only for war- I hear the things that are said that would never be said face to face and I shake my head and walk on, knowing that people are people and knowing from what I see in front of me who can be trusted and who can't, who can be a friend and who would step on me to climb to the next level given that chance or attack me as soon as I step out of their lines. I see you on my personal profile, in my private messaging, in the groups I'm in, on my page, on your pages, in your blogs.  I know who you are from what I see you post to the world and what you say when you think no one is paying attention. I know who you are from the way I see you treat people whether they are (figuratively) standing in front of you or where they could never know what you say. I see and I know where I stand because if you would be like that with them, you would be like that with me. I won't repeat what is said, but I know for myself.

I see and I do not dislike you- I know where you are coming from, I can understand your reasons for what you say. We can even be pretty good friends, I just know where I stand and how close to let that friendship get. I already learned the hard way that even the people you like and trust the most will stomp on you in a heartbeat given a bit of gossip and a foothold into a new world (Raising Rebel Souls, looking at you on that one.) It is what it is and it will be what it will be. Blogging seems to be a cutthroat business because... I don't know why, I guess not everyone can be heard, as if there's limited space on the internet or something, and someone else always has to be wrong so I can be right- it's a lot like a playground with the "if you're friends with so and so, you can't be friends with me" horsecrap I hear being yelled around with the thinking that you have to agree with everything your friends do or you can't be friends which leads to the whole guilty by association.

Now, every once in a while, no matter how hard I try to stay away from the crap, no matter how I ignore it or avoid it, or pretend I never even saw it, I get dragged right into the middle of it so here's a bit of advice that some might consider taking- if you wouldn't say it to their face, don't say it behind their back because chances are, they're going to hear it. If you don't want the world to know, don't tell the world. If you don't want anyone to see, don't show anyone. We try to teach our kids internet and cell phone safety by illustrating how quickly things can go viral. We teach them about screen shots and photoshop and that tell a friend game where it goes around the circle and goes from "I want ice-cream" to "the green monkey flew to India on a blue horse"... and then we don't practice what we preach and we get all upset when something we didn't want repeated goes viral... or at least gets repeated to the person we were talking about and in the world of screen shots, the person it was said about doesn't hear about colorful animals. Trust me, I've had a few screen shots handed to me and it's not a fun thing to see. It hurts.

As for the people taking tales back and forth, what's your purpose? What do you hope to accomplish? To cause divide? To show that you are a better friend than the person who had something to say? because I can promise you you're not. To start a war so you can kick back with your popcorn? because it's really not for either the person talking or the person being talked about. Both can do without your interference because all your interference is going to do is cause heartache for both parties with nothing ending up any better than it started out, and more times than not, all ending up a thousand times worse.

And, since we've gone everywhere else, if you don't want to be called an asshole- don't be an asshole. If you are not an asshole- why do you care if they say you are? Does a stranger or semi-stranger's opinion mean so much to you that they get to define who you are? What's that saying... Those who matter don't mind, and those who mind don't matter? The people who matter know who you are- good and bad- and choose to stick around. That has to mean more than a bunch of people talking out both sides of their mouths. Let it go or take it to heart, that's your choice.

All that being said, I, personally, have no interest in gossip or bullshit, hypocrisy, judgmental attitudes, or the things that are said that would never be said face to face. If you are looking for the person who is intentionally and mean-spiritedly spreading any of it, you need to take another look at your friend list because it wasn't me. If you're looking to spread it, look somewhere else because I don't want to hear it. If you want to unfriend me, unfriend me. There's a good chance I won't even notice until someone points it out because I have better things to do than look around and see who wants to be my friend today. I have more serious things to worry about than if you like me. If you don't want to be my friend, well, *deep breath*, it'll be hard... but I'm sure I'll survive.

Now, if you will excuse me, I have things to do. Thank you, and have a good day.

Sunday, December 29, 2013

Stop and smell the roses...

I was talking to Alex's principal around the beginning of break, asking about possibilities for my Goofy One, he did the best he could to answer my questions and point me to the right people and then he said, "Have a relaxing break and enjoy the kiddos." and I laughed. Relax. Enjoy the kiddos.  Right. Does he even know what's coming!? How in the world can I possibly relax and who has time to enjoy kids!?

...what's the point in having kids if you don't take the time to enjoy them?

Having serious things going can make you a serious person if you don't watch your step. Being a serious person isn't necessarily a bad thing, serious has a purpose, but when the serious takes over your life you lose sight of the lighthearted parts. The parts that make the serious worthwhile.

Friday night, I sat up and listened to Thing2 play Grand Theft Auto 5 with Goofy and the Little D. (Yes. Say something. I will write an entire post on why I don't censor what my children see and hear.) (Goofy tries to censor my language and the 2 year old already knows that mawmaw in the only woman in this house who gets to drop the F*bomb. That's good enough for me.) I watched my brother get so excited over their laughter and  how much fun they were having together he had to go buy another mic to feed into the insanity and play along with them. Listening to Thing2 get so into playing with his uncle, his 7 year old brother and his 5 year old cousin, listening to the little ones' happiness to be able to play with Thing2 and my brother, as if there were no one in the world who would be cooler to play with... the obvious love they have for each other... I have been blessed.

Last night when we went to the store, I decided to give Alex a chance to be just a regular almost 12 year old boy. I closed my eyes and jumped. I handed Alex to Walter and let them run wild- raising hell and causing a ruckus, as teen and preteen boys tend to do in stores without parental supervision. I'm not sure what raising hell and causing a ruckus consists of but I did spot Walter and Alex in the toy aisle, Walter on his knees picking up an entire display of compressed wash cloths stamped with various cartoon characters while Alex sat in his stroller and cackled at Walter's grinning and grumbling. When we met up at the cash register, Walter and Alex telling their tales of mayhem had the entire line smiling along at their craziness. The look of pride in Walter's smile and the excitement on Alex's face... totally worth any judgmental looks we could have gotten.

This morning, I woke up to find I forgot to set the coffee. I'm going through the motions, barely awake, and shook the old coffee grounds a little too hard over the trash can, a glob missing the can and hitting the floor. "damnit." My husband looks over, "I just cleaned that floor." I stood there with my brother, confused, both of us looking at the coffee grounds and looking around at the rest of the floor trying to find where it had been cleaned. We look at my husband, "No you didn't." He gets a cocky tilt to his shoulders and says, "well, if it's not the way you want it done, you can just do it yourself." My brother starts laughing, I looked at my husband, looked over at that laughing jerk, "Did he seriously just make fun of me?" Through his snorts of laughter and trying to catch his breath, my brother responds, "Yes. I believe he did."

Yeah, I think I need to take the time to enjoy them more often. Who cares what's coming due or what has to be done? These days only happen once, I don't want to miss a single one of them.

Thursday, December 26, 2013

What A Good Listener Looks Like.

You know I requested data. Well, Christmas Eve, I got an e-mail from one of the people who work with my Goofy One. It wasn't the data I asked for, more of a quick report, but one of the things mentioned had me seeing red and texting my friends cussing up a storm. Goofy's RTI appears to be for behavior. I don't understand what they have going- why he would have RTI for ADHD behaviors (true. swear.), but not academics when he's struggling with reading, how remedial reading wouldn't be RTI, why he wouldn't have qualified for an IEP for ADHD if his behaviors are making him struggle to the point he needs RTI, why he's getting behavioral RTI instead of the Functional Behavior Assessment I requested last year... etc. but whatever, this is the part I was cussing about:

"For Listening: a good listener has a still body, faces the speaker, is quiet, nods while listening, etc."

Is she insane!? What the hell is she thinking and where in the world did she get whatever credentials that would "qualify" her to be teaching this crap!? Absolutely not. No.

Does she have any idea what she's doing to my son? I follow her kind teaching and conversations wear me out. I can only hold a conversation for so long before I just lose it. Not like flipping out or melting down, but seriously just forget to pay attention to what I'm doing.

What she's teaching doesn't work. It actually makes it worse. Going in I'm all, "act normal. act normal." I keep my hands below the table, sit nicely, make eye contact...75% of my attention is on acting normal, 15% is trying to figure out the subtext- "I would like to thank you for explaining it to me three times because I didn't get it." was that sarcasm? whoop, there went the next 5 sentences while I try to figure that out, 5% is trying to pretend I'm super focused- never missed a word, 3% trying to copy the people I'm talking to- following their lead for the rules I haven't figured out like how long do you need to hold eye contact? what's too short, what's too long? when can you glance away and still be "listening"?, and just 2% is actually on what's being said. By the end of the conversation, I have no clue what just happened.

I can't even take notes to help me remember because there is no room for it. Hands down, eyes up, sit still, pay attention, be a good listener. all the way up until I lose it all. I forget to act normal. My hands come up, my eyes go down, my brain works the way it works, links what it wants to link and I can tell you.

I can tell you the beautiful pattern of diamonds on the pen that was a magnificent shade of blue that twirled at just the perfect angle in the sunlight and I can tell you the subject we were discussing, what was said about the subject, but I can't say I didn't miss something in the split second I was wrapped up in admiring the pen in my hand. I can tell you how the paperclip looked laying on the table, how it felt under my finger and what was said in the moments I looked at it, touched it, and as it slid into place on the pages of my notebook where it belonged.

I can tell you about the moment I looked up and caught the look of surprise on the face of the person sitting across from me and realized my "normal" slipped. It probably looked to them like I was not being a good listener, like I couldn't care less what was being said, like I was distracted, would rather be somewhere else, like they were boring me. I wouldn't want to be rude, or make them think I don't take this seriously. I wouldn't want them to think that I'm not a good mom because I won't even focus on a conversation that I asked for so I sit up and try to follow the rules: a good listener has a still body, faces the speaker, is quiet, nods while listening... and I struggle to follow when 98% of my attention is focused on being a good listener.

Not my Goofy One. I'm going to have to find a way to unteach her teaching and teach him to use what he needs to increase listening comprehension instead of worrying so much about looking normal that you miss the entire content. With any luck, he doesn't apply what she said to the real world anyway- hands pinned to his side, eyes wide open, face reaching toward me in response to "What is a good listener?" is just that- the answer to a specific question and nothing more.

Disobedient Family and The Perfect Christmas.

Family. The reason I deep Google anyone who works with my kids.

"Oh, good, he has a cup. I was afraid he would choke again."
"If you give him meat, he will."
*hands him another chunk of ham*

Normally we host holiday gatherings at our house to contain the demons and limit how much stress is put on them and us. Normally people don't like us much and don't wish to attend our parties. This past year or so, our popularity has increased and many people want to come visiting for the holidays. I'm not sure, but I think it's because I haven't had reason to offend anyone recently. That may have changed tonight when I told someone that they were friggin insane if they thought for a second my kid would be spending the night at their house but that's beside the point. The point is we had company. who don't listen.

I can be a little... specific... when it comes to my boys. I text Alex's daddy somewhere around the last day of school that Alex's bus staff were sweet enough to give him a $5 gift card for McDonald's if he was looking to spend 30 minutes or so with his boy. I detailed what to order, how to prepare it, what goes when, how to feed him, where to sit.... and then suggested drive thru and eating in the truck with the same ordering, preparing, feeding instructions. Daddy said, "maybe tomorrow." I don't know when the last day of school was, time has sort of lost relevance with no routine to make it necessary. We're just floating around aimlessly, in no hurry. BUT, "tomorrow" has definitely passed. with no Alex/Daddy man time.

Alex's step-mom- his mommy- and his sister had plans to come see Alex today so I text her to confirm the time to make sure she had fresh coffee and asked if Daddy was coming with her. and he was :)

I sat Alex down to talk...




I thought I had this Christmas perfect. I had it all figured out. I have learned lessons and I know what I'm doing. I was NOT going to try to make Alex want toys he has no interest in. I'm tired of buying the "perfect" gift just for his brothers or the girl to end up with it because he has no interest. This year I would respect his severely limited interest (yes, singular) and only buy toys made out of a certain material and there was no way in hell I was wrapping a single one of them.

This Christmas is going to be just the way Alex wants it.

Christmas Eve, I'm sitting there with Alex *patiently explaining* that Santa was not coming until he got his butt in that bed and went to sleep, Santa doesn't deliver to kids who refuse to sleep... and Alex laughed. He laughed hard. He was letting me know that there was no way he could sleep, he was just too excited about Santa coming. (who knew he even knew who Santa was!? I've been talking about Santa for years and he never seemed to care!) (or, maybe, as my husband seems to think, I'm delusional and these conversations are all in my head.) (either way, I like it.) We talked about Santa and the things Alex wanted. For the record- teething rings were not ALL he wanted but I'll be damned if I have a clue what else he could possibly want. Sometimes, I really wish he had words.

I waited forever for the Melatonin to kick in so I could very lovingly and oh-so-carefully lay out each carefully chosen gift in perfect lines of squeezable, squishable, stim-worthy awesomeness.

 
Christmas morning, Walter goes with me to let Alex know that Santa came. He dance-skipped his way to the living room and sat down beside his stash. He picked up each one and admired it, turning it in his hands, giving it a little bit of a clench before throwing it and moving on to the next one. Until the time came that he sat beside me and solemnly watched everyone else unwrapping gifts, exclaiming at what they found hidden inside. It seemed to me that maybe he might be a little sad that he has no gifts to open, which is ridiculous because he hates wrapping paper the way Dracula hates sunlight. Absolutely ridiculous, Alex wanting wrapping paper. right?
 
Just in case, Walter agrees to let his brother help him. I hand Alex Walter's present, Alex throws it at me. whew. ridiculous. Still, I can't shake the feeling that he feels left out.
 
When I remembered Alex's mommy was bringing presents, I decided right then and there that, even though I demanded that everyone stop with the freaking paper, the boy will unwrap a present today if I have to wrap the danged thing myself.
 
Mommy gave me an estimated time that she would be here with daddy and sister and I sat Alex down to talk....
 
 
 
 
I told him that his daddy was coming to see him. I asked him if his daddy was bringing presents. I asked him if the presents would be wrapped. I asked him if he was going to open them. With each yes, he got more and more excited until he was laughing uncontrollable, barely able to sit on the couch for me to tie his shoes.
 
When Mommy and Daddy came walking in with their bags and bags of Christmas presents from Alex's family... I have never been so happy to see so many people completely ignore every word I say. So many prints, so many bows, so very many Christmas-y colors wrapping each and every box. Daddy sat with Alex almost in his lap and unwrapped present after present until Alex reached up and finished unwrapping the one daddy was holding to the shock of everyone in the room and then initiated the unwrapping of the next present only losing interest in ripping the paper after he exposed the light up duck inside. His brothers and the girl still ended up with a lot of things but the surprise unwrapping and the hand full of toys that he is interested in is just amazing.
 
Thank God for family members who just don't listen. Who just don't give up no matter how many times their efforts don't go as planned.
 
...Well, some family members who don't listen. Don't feed my kid ham. He will choke. He did get some really fabulous Christmas-colored Goldfish, though, and he loves sweet potato casserole.


Friday, December 20, 2013

Requesting Data

I had planned to take a break from blogging to get ready for Goofy's meeting. That didn't last long :/ Already, there's something new to tell you, another several steps laid on the paper trail.

There for a second, I forgot. I thought maybe I was blowing everything out of proportion, maybe my faulty memory is to blame for all of the utter bullshit I remember. Maybe I'm just crazy. Maybe things aren't quite as bad as I thought and I am just being an unreasonable woman imagining things that didn't really happen the way I thought they did. With ADHD, questioning my memory and my perception is a constant. I started to feel bad.

HA!

I requested the meeting. The next day the Area Coordinator e-mailed me, I told you about that, I told him I was available any of the offered dates after Alex went back to school. The next day, the counselor e-mailed me asking for a time. I told her mornings were best, but I was available any time. The Area Coordinator e-mailed back that the 10th and 14th were good for him in the morning. The next day, *silence*. The next day, last night, actually, the counselor sent out an e-mail asking people to check their calendars for January 8th at 8am. I forgot about Area Coordinator's dates and said yes, but I will have to take Goofy because his bus doesn't pick him up until 8:24. Then, *silence*.

Now, by this point, I'm seeing a pattern. Out of 6 people in the e-mail conversation, only 3 are participating- me and 2 others. and it's once a day. with no serious attempt to set a date. It looks to me that they are sending out periodic messages to shut me up and to stall though the last day of school before winter break- which would be today. but then I think, woman, you are losing your ever-loving mind to be so paranoid! Until I realized this e-mail came after the e-mail I sent that exact person earlier the same morning. The e-mail that had me seething at the silence and chanting: don't lose your temper, don't lose your temper, don't lose your temper.

"RTI (Response to Intervention) plays a critical role in how students are identified as having a disability and needing special education services." and "The purpose of RTI is that of a prevention model to limit or prevent academic failure for students who are having difficulty learning by providing "scientific research-based interventions" to bring students up to grade level achievement."
and "LDA supports the promise of RTI as an early intervention process initiated by general education to ensure that, at the first sign of school problems, students will receive academic supports including:
  • Early, high-quality, scientific research-based interventions
  • Continuous monitoring of student performance and progress during interventions
  • Use of response data to change the intensity or type of subsequent interventions
  • Parents and families informed and involved in team decision making throughout the intervention process"
Now, this is how I found out Goofy was getting RTI- Me, wiping funk off of Goofy's face: "Why are you wandering the halls?" Nurse: "They have RTI in the mornings." Oh, ok. and then several weeks later: "Goofy, do all of the kids in your class go to RTI?" Goofy: "no, only some." Me: "What do you do there?" Goofy: "I go to reading and [this other class] to do plays, like acting!" Me: "like role playing social things?" Goofy: "No, like acting."

This is how I found out what RTI is: *GOOGLE*

So, if I'm reading those descriptions correctly, RTI is important for identification, is used for evaluation, and helps provide a Free Appropriate Public Education- an education designed to meet the individual child's needs as adequately as those of their non-disabled peers. That's great! Under FERPA, I have the right to examine all records relating to my son's education, period. I have the right to review records relating to the identification, evaluation, educational placement, and the provision of FAPE for my child under Section 504 (#44)  and IDEA.

So, I asked nicely for all data collected regarding Goofy's RTI to review before the meeting. and then I asked nicely again. by the third time, I'm pretty pissed off. I keep hearing this voice in my head, "Mac, I will not allow cursing at staff." and I'm all @!#@#!@##$@# don't lose your temper. don't lose your temper. don't lose your temper. Then comes the light bulb... don't lose your temper, this is going to look great on your request for an impartial hearing. ...I wonder if I can choose Alex's school if things go the way I expect, they have general ed kids and I think it would be perfect for Goofy with the small class sizes, and the staff having a clue.

and then I got to work. I wrote a formal written request, documenting my concerns of not having a meeting date a week after my initial request for one, documenting my concern that after 2 attempts I still don't have Goofy's data or the agreement to provide the requested data a reasonable time before the meeting, my expectations of working as a team to identify and meet Goofy's educational needs, and underscoring the fact  that I am available any date they suggested after Alex goes back to school and that while mornings are better for me, I am available at any time. and then I asked for my letter and their written response to be added to Goofy's educational record.

I followed Wrightslaw's advice on this one-  I printed up copies for the Area Coordinator and the principal and delivered them to the school office. The person available to take them just happened to be the principal. I documented who was there, doing what, what I was wearing, what she was wearing, what was said, and what time I handed them over. I wrote it all on the back of my copies and filed them in a labeled envelope under communication attempts when I got home.

I'm not messing around this time. If he doesn't qualify for an IEP, it will be because he doesn't qualify for an IEP- not because we were jerked around, our rights being trampled in the confusion.

Tuesday, December 17, 2013

The last mental health day before winter break

Zombies. again. I hate zombies, but I must say they are way better than dreaming about losing my kids.

I sent off that e-mail requesting a meeting Sunday and then every time I got a new e-mail, my heart bumped and I felt sick. To distract myself, I turned my MP3 player up and went to do laundry. I was taking the Goofy One's clothes out of the washer when my MP3 player hit the song Timber. Next thing I know, I'm getting a mental flash of Goofy's school psychologist twerking in a bra and thong, face down, booty up. all I could think was, wow. that's going to make this IEP very interesting. Now, the man is attractive but picturing any straight-laced 40-50 year old man twerking in a thong with their bottom in the air is a comical picture. I laughed all freaking night long. "They say they won't but I bet they will." I think that may be my favorite song ever now :)

That didn't stop the zombies from hitting that night. All I remember from that night is seeing a single zombie and the mumbled phrase, "fucking zombies" when I woke myself up.

Monday was a rough day. I was horrible. Too little sleep, too much drama... I was not nice. BUT, I did get the e-mail I was waiting on. It started "Mrs." and I thought, shit. It usually never goes well from that point on. This time, however, he said he talked to the principal, her schedule is full this week. They would like to meet with me as soon as they get back from winter break. ...is that politeness and agreement to a request or is that willingness because they see it, too? Hm. Watch, I worked my butt off and won't even get the chance to argue my case.

I was so tired and cranky from lack of decent sleep that my husband put the girl to bed for me so I could get some sleep. I was all snug in my bed, thanking God for small favors by 8:30. At 11:45, I'm still laying there staring at the green light on the cable box, going over my argument. Comparing evaluations, IDEA disability definitions, rules for Specific Learning Disability, rules for Other Health Impairment, why he I think he might qualify under both, rules for medication, the reasons I am not increasing his dosage... Thinking about what I have and what I still need, what needs to be searched out, what needs to be read again... My brain doesn't seem to realize we have more than 2 weeks to get ready.

4am, the Goofy child is in my room chasing cats, yelling about something with every freaking light on. I scream at him to get the heck out of my room and turn the effing light off (yes, I'm a bad mom.) and next thing I know it's 5am, Walter and Goofy are fighting in the hall, the girl is screaming... Walter's trying to clean up soggy bits of diaper, fend off the Goofy One, and calm the girl's crying. Such a sweet boy.

As payment for loving his mother so much that he'd go through hell to let her sleep, Walter is the last boy who's taking a mental health day with me before finals start and before he's trapped here with a bunch of wild beasts for 2 weeks. One day of peace and quiet.

Sunday, December 15, 2013

Goofy's IEP: Getting started.

Going into this year's battle, I'm not the same person I was last year. I might be a little more cynical, a lot more disillusioned but I've learned from my mistakes (some) and I have a better plan. This year, I'm not just asking for an IEP and letting it take it's course. This time, my plan doesn't end with the Goofy One getting an IEP. My plan ends at a Due Process Hearing.

The psychologist I talked to last year advised against getting an Independent Evaluation or going beyond that (keep in mind, this is the same guy who told me, "medical is medical, educational is educational." and that I was wasting my time (notice (a)(4) in that link) looking for medical diagnoses to push the educational) because he said it would lock it in to where the school didn't have to do anything at all while all of that was going on. Big shock, considering "medical is medical, educational is educational," that's not exactly accurate. It's called the stay put provision. Pretty much, if he has an IEP, he keeps what he's got during the hearing process. If he doesn't have an IEP, nothing changes while we get an Independent Evaluation- he never had one to begin with, so what is there to freeze? 0-0=? or 0 holding at 0=? No risk.

Not that I want things to go there, but I need to have what I need to get that far. You can never go wrong in being too prepared.

(side note: don't just take what I say as God's honest truth. I'm not a lawyer, I'm a high school dropout who went on to the uber-glamorous life of  being a stay at home mom with a short stint of this and that in between. I wipe snotty noses, dirty bottoms, messy hands, and clean shit off of walls for a "living"- I'll tell you what I found, you go read it for yourself.)

Ok, so, I'm starting out preparing for the Due Process Hearing. There are many steps before you get to that point but it's very important to make those very-well-documented-steps. Last year, I made the mistake of asking for evaluation in person the first time- make sure all of your requests are formal written requests- pics or it never happened. My second attempt was an e-mail and that was followed up with a hard copy delivered to the secretary in the elementary office. That turned out well, *sarcasm.* Two staff members I  had issues with over things I requested and they didn't want to deliver told me that the paperwork I turned in could not be found. Is that allowed? No. but it is what it is and I didn't push too hard because people make mistakes, you know. You have to understand that people are people. Imperfect. Human. Wholeheartedly trust your team, they have your child's best interest at heart, it's not like they would purposely do anything to deprive your child of a Free Appropriate Public Education... no matter how expensive it is or how much extra work it takes. *snort* What's that saying about good intentions paving the way to hell? Not this time. This time I'm creating a paper trail.

Wrightslaw says to deliver your formal written request to the secretary, make notes, etc... They have really good points. You can read about delivering your formal written request here. My advice is to follow their advice... unlike me. You know I'm too hard headed to follow good advice from professionals until I fail in every way possible my way ;) I wrote my letters. You can find very nice sample letters, fact sheets, and forms here. I made copies of all evaluations. I wrote a request for evaluation, I wrote a request for a copy of Goofy's cumulative education record and created a packet for each invited person. I wrote an e-mail request for a meeting with the SSD area coordinator at his earliest convenience (it's been a good while since I saw that man. I do enjoy his company.) to discuss Goofy's academic performance, and available options to help him receive meaningful educational benefit from classroom instruction and to be sure that he has the services and accommodations he needs to receive a Free Appropriate Public Education... and invited the school psychologist (I like him, too.), the principal (lovely woman), the counselor (I'm still sore over the whole dyslexia thing... and the part where she mistakenly thought I couldn't submit another request for evaluation), and the teacher (who, for being new, is surprisingly high on my list of likable and trusted people.). In the meeting, we can discuss the possibility of evaluating the Goofy One for an IEP in a way that they each get a copy of my request with no chance of it- or the evaluations- being lost. *team work*

Look at the IEP Success Kit by the Special Education Advisor. There are so many wonderful things in here to create your own IEP Binder. To be honest, I love the Special Education Advisor with a passion, I think they are wonderful in everything they do... but I prefer the wording in MPACT's sample letters, which I linked above. The only one I saw in the IEP Success Kit that I don't remember seeing in MPACT is the Requesting Assessments Prior to IEP Meeting. and possibly the Notice of Tape Recording IEP Meeting. but MPACT also has letters the IEP Kit doesn't.

The other thing that's changed this year is me. I can't keep my heart from being invested in this, he's my son and I know first hand what happens without intervention, without meeting his needs, without helping him learn. Helpguide.org has a great article on adult ADD/ADHD. They list wide-reaching effects of untreated ADHD as:
  • Physical and mental health problems. The symptoms of ADD/ADHD can contribute to a variety of health problems, including compulsive eating, substance abuse, anxiety, chronic stress and tension, and low self-esteem. You may also run into trouble due to neglecting important check-ups, skipping doctor appointments, ignoring medical instructions, and forgetting to take vital medications.
  • Work and financial difficulties. Adults with ADD/ADHD often experience career difficulties and feel a strong sense of underachievement. You may have trouble keeping a job, following corporate rules, meeting deadlines, and sticking to a 9-to-5 routine. Managing finances may also be a problem: you may struggle with unpaid bills, lost paperwork, late fees, or debt due to impulsive spending.
  • Relationship problems. The symptoms of ADD/ADHD can put a strain on your work, love, and family relationships. You may be fed up with constant nagging from loved ones to tidy up, listen more closely, or get organized. Those close to you, on the other hand, may feel hurt and resentful over your perceived “irresponsibility” or “insensitivity.”

 Look familiar? When you talk teenagers, you're looking at a high risk of dropping out when they can't do the school work, with the social difficulties, with the inability to keep up, with the feeling of inadequacy that comes with all of those. It's not that they are stupid, it's that they just can't cut it in the classroom. I can't allow that to happen.
 
Walter has ADHD but with his meds, his ADHD doesn't interfere with his academic performance. Walter is fine. He has plans, he has goals, he has the support he needs, he has confidence in his abilities, he's not just floating through life unfocused and unaware. He is not struggling in school (except math, and he's getting tutoring for that). He does not need a 504 or an IEP.
 
Goofy is on medication, and the medication does help, I've made sure this teacher sees the difference. Last year the teacher and the nurse pushed to have Goofy take his medication at school, I refused. This year Goofy takes his meds at home except for the 2 days per month that he has to use the last of his pills in the nurse's office- the pills that we agreed should be kept at school for just in case in exchange for him taking his meds at home. The teacher has noticed the difference and it's documented in her report to the evaluator at UMSL. The Goofy Child's medication is working but it's not enough. He needs help in school and that brings us to the difference...
 
I am determined. At this point, I'm not furious, I'm not on the edges of insanity (*cough*yet*cough*), I'm just angry enough to be seriously motivated and determined enough to go to any lengths necessary to get this child what he needs to have a free appropriate public education whether it's FAPE under IDEA or FAPE under section 504. I also understand that this isn't the end of it. It's very important but it's not now or nothing.
 
And, that's where we're at right now. I'm hoping we can have the meeting to discuss evaluation before Christmas break, then I have several weeks of free time before the ball starts rolling.
 
 

Saturday, December 14, 2013

Ready.

It's done. All of the evaluations are finished, all of the reports are in. The unanimous conclusion is the Goofy Child has ADHD- Combined Type, severe.

ADHD is the reason for his executive function deficits. ADHD is the reason for his less than appropriate social skills. ADHD is the reason for his adaptive functioning troubles. ADHD is the reason for his sensory processing impairment. ADHD is the reason for his auditory processing difficulty.

ADHD falls under Other Health Impairment, a class of diagnoses listed under IDEA's 13 qualifying disabilities.

The only thing that was not really addressed in these evaluations was handwriting. Not so much handwriting as in sloppy handwriting but as in "Goofy tends to hold a pencil with a three finger grasp. He holds the pencil very tight and handwriting is labored." "handwriting skills are poor. He has concerns with legibility due to the following concerns: lack of ability, staying on the line, poor sizing of letters, and spacing of words. When observed copying a sentence, Goofy demonstrated a great deal of letter reversals." Which, that doesn't even count because it's from the occupational therapist. Last year's school occupational therapist had plenty of concerns like, "this can cause difficulty with reading." and "this can affect academic tasks." and "the results of this evaluation indicate that Goofy's sensory/motor skills do appear to impact his academic performance and/or classroom participation in the educational setting." but that didn't matter at all because without an educational diagnosis, he doesn't qualify for SSD services.

 
 
This chart kind of confuses me on that. Related services are listed under consideration for an IEP and a 504. Does this mean that he can get OT under his 504? There is a documented need for a related service- OT- since October of last year. Does that mean that in ignoring the evaluation because he did not qualify for an IEP, they denied him FAPE? 

If he's getting remedial reading through school, if he's already in a social skills group, if he's getting RTI, if he can get OT under his 504... Does he still need an IEP? If he qualifies for all of this under 504... why would he not qualify for an IEP?  IDEA offers greater protection than Section 504.

This might be where an advocate comes in handy. I'm trying to decide if I should continue the path I'm on to getting an IEP or alter my course to build up his 504. I've been thinking about someone I can talk to, someone to bounce my thoughts off of, someone who knows what they're talking about, and to get real, unbiased advice. There's no one in the Goofy Child's school, and Alex's school doesn't know my Goofy One. I have three books on my Christmas wish list (I strongly suggest you ask Santa for them, yourselves)-

Wrightslaw: Special Education Law, Second Edition
Wrightslaw: All About IEPs
Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide

but I'm not sure Santa's going to be bringing them to me, I'm not sure they'd help with this part, I'm not sure I have the time to wait- or if it's worth the wait, and it took me a full month to find out that Jack did not die in that gas station parking lot after being shot multiple times and I have no clue what Eduardo sees in the forest yet. (Dean Koontz, Winter Moon)

What I need to do is check his academic performance and how his current 504 is meeting his needs and what gaps are left to fill so I e-mailed his teacher asking for a conference. His teacher is great, have I mentioned that?  She is. She seems to be doing the same thing I am- floundering around, searching out ideas on her own. I don't know how she's not burned out and pissed off but she's all, like, not Mary Poppins, she's sweeter than that and more... cheerful. I fully expect a heavenly light to shine down on her head as wings pop out and angels sing. ...in a good way. She's genuine. I like that. Goofy could use some sunshine in his days. He's in the same place he has been... writing is a concern, he's making progress in reading- baby steps, math is his strength. I keep coming back to the reading and writing. He needs help.

Here's the worst that can happen... I request evaluation, he doesn't qualify for SSD services yet, we expand his 504, and try again next year. The best... he gets an IEP and gets more help. More 1:1 or small group time, more targeted interventions, specific goals and benchmarks to meet those goals, the same accommodations and modifications that are in his 504, more and more seriously protected rights, and related services- including OT. So, if he has a diagnosis that qualifies him for IDEA protection and that disability has a negative impact on his educational performance... to not have him evaluated would be foolish.

Alright, then. *cracks knuckles*
 
 


"It's going down,
I'm yelling timber
You better move,
you better dance"
 
(Man, I hate that song but the girl loves it.
Misery loves company, you're welcome.)
 
Ready?
 

Thursday, December 12, 2013

So wrong...

I know. I'm probably going to burn in hell for this but I swear, it'll be worth it.

I saw this video early yesterday....

 
I shot this video last night...

video
 
 
Come on! That was freakin' hilarious!!! Who wouldn't get video so you can watch it over and over and over again?  I am questioning how wise it would be to try to send him to school in those boots...
 
I love that kid.
 
and this one...
 



 
And this one...
 
Walter and Goofy arguing over a game...
Walter screams: You're a FAIRY!!!
Walter gasps and looks directly at me.
I give Walter a death stare.
Goofy starts flapping around, hopping on one foot: YAY! I'm an angel! I'm an angel!
Me: Yup. That's exactly what that means.
 
 
and this one...
 
 
Hell, yeah, we're on task. We're so on task, we are on task staying fools! Absolutely homework related.  ...and no. That is not my frog. or my handwriting. *cough* Well, if Goofy's teacher would accept this as evidence that we did so do his homework no matter what his folder says....

 
well, then that could possibly be my frog. (the circles, not the note. The note was true. damnit.)




This one, too...



Oh, yeah. I have been blessed.




Wednesday, December 11, 2013

Tired of waiting on the world to change.

These past weeks, I've been... yeah. I keep thinking, all I have to do is get through this week. Once this week is over, it'll be good. Next week will be better. Then by Wednesday of next week, I'm all... all I have to do is get through this week. One week of waiting bleeds into the next and before I even know it, I'm missing an entire month or two because I was too busy getting to next week to pay attention to this week. 

I have a friend who took a week offline. She told me she was going offline and I thought... are you insane!? We're BLOGGERS! She says it's just too much. she can't take any more. She wonders what there is to say that has not already been said. I totally get that- the same lame jokes, the same tired memes, the same arguments, the same preaching, the same fighting, the same judgments day after day after day. We've seen it all, we've said it all, we've heard it all... what more is there? At this point, we're beating a dead horse.

Then I look at my blogger newsfeed and... I check my facebook profile and... I check my page newsfeed and... I see it. It drags me down. This page fighting with that page, this blog regurgitating the same old material someone else posted not long ago, that blog going off on yet another rant about what's wrong with society... There is nothing here that makes me smile. There is nothing here I want to see. There is nothing here that brings me joy.

This online world is supposed to be the place I go to relax. The place where life is easy and I have nothing more to worry about than building relationships with the people I like. Spending time with friends, laughing, joking, sharing our troubles, offering and accepting support when it's needed but instead it's turned into a job. It's a place I have to go every day, no longer an enjoyable place to spend my free time.

It's gotten to the point that even the positive shit is annoying. I've been known to mock our superintendent for the glittery rainbow droppings he sprinkles all over twitter from his perch on top of his fabulous unicorn. I listen to him and his underlings talk about relationships and being in the people business, I look at them, trying to figure out their angle, trying to find the trick and... holy shit. they're serious. People still think like that? Really? Geez, I'm out of touch. Jaded by my recreational activities. You hear how messed up that is?

Fine, you know what, things are changing, right now. I've had enough of this crap. This feeling like crap. This acting like crap. I got comfortable. I have my comfy pj's, my cup of hot cocoa, the e-cigarette my husband bought to encourage me to quit smoking, and I sit at my computer ready to work. I ditched a bunch of blogs, dumped a lot of pages, hid a lot of friends (how do I have people on my friend list that I don't even know?), and in the middle of my Great Cleansing, I got a message from a friend wanting my opinion. My opinion knocked me on my ass. "You have an entire lifetime of possibilities ahead of you. The sky is the limit. You are completely free to be you, uncensored by anything but yourself. Dream big." Hey. Look. There I am. I missed that me. and...

I have an entire lifetime of possibilities ahead of me.

The sky is the limit.

I am free to be me, uncensored by anything but myself.

How could I have forgotten that? This opens up a whole new world. It opens up a whole new path. I'm looking to censor my world. I'm trying to change the people around me to change my view. What I forgot is I am in charge of my world. I don't need to be dragged along with what everyone else is doing, what they want, what they need, what they say... This is my dream. I'll decide where it goes from here.

I got up this morning and I stood frozen in the kitchen. 7:29. Do I yank Alex out of bed, shove him into clothes and rush him out the door in the next 15 minutes or do I wait, let him have his time and take him and the girl to drop him off at 9:00? I really need to get out of the house but I really don't think the school likes to be used as my "yard time." 7:29. If I take him to school, I'm using gas. I still have a speech eval, an OT session, and support group tomorrow. Can I afford the gas? 7:29. Bus or car? The clock is ticking. 15 minutes. Diaper, clothes, socks, shoes, snow pants, coat, scarf, hat, gloves... That's a lot of stuff to put on him in 15 minutes. I wonder if my husband has gas money. 7:29. Is that clock broken? Nope. um... then it hits me. What if the answer is none of the above? What if, for one day, I do what I want to do? If I could do anything in the world today...

*calls bus garage* "Alex won't be going to school today. Yes, all day."

Me 'n' Alex? We're taking a mental health day. Together. And starting right now, this very minute, I decided I've had enough. I am going to be the change I want to see in the world. I'm going to be who I want to be. First thing on my list of plans to change the world... Elmo's Christmas Countdown. I'll see you all later.



I don't know where this came from, so I'm just going to say it's Jim's.

Monday, December 9, 2013

Co-parenting Autism

Alex's father doesn't know much about autism. or Alex. You kind of have to know one to get the other.

At first glance, looking at Alex, you aren't going to see him. You will see a boy who doesn't look at you, who doesn't want to engage, who's finished with the conversation after he says hi. Once both parties say hi, his social obligation is fulfilled and he's ready to bounce away to the next hi. If you try to push him for conversation, he'll get more insistent in his attempts to leave while vocal stimming, screaming if it gets to the point of screeches. He has no real destination in mind. He won't notice the people, or objects, he just wants to walk. run. bounce. It's the walls he's after. He will run his fingers along the walls, he will follow the boundaries. It's movement he wants. Walking. Running, running is better. People? Why? He said hi. The only way to get his attention is to sit him down and if he's sitting down, he'd better have your full attention or he's leaving, or throwing whatever you sit close enough to reach. He has better things to do than sit here and wait to be noticed.

Knowing how to interact with Alex is not easy. Much of our mother/son time is spent like this...

 
I follow him around like a lost puppy while he ignores me. I lean in to kiss his cheek, he raises his elbow. I go to give him a nuzzle, he spins away. I try to talk to him, he pretends he doesn't hear a word I say. The conversations we have don't happen every day. Alex's father just witnessed his first one ever and I can't say that he would see it as such from where he was sitting. Our conversations are hard to decipher unless you see them regularly.

Alex's father sees autism as a person who doesn't live it. What he sees is the surface. The traditional "lost" child. The missing puzzle piece. "His mind may not be there, but he's still a growing boy." When the world looks at Alex, I know what they see. They see classic autism. Severe, non-verbal, cognitively impaired, developmentally stagnant autism. When the world looks at Alex, all they see is what they think autism is. What they are told autism is. a tragedy. The tragedy is believing what you are told without looking for yourself. The tragedy is that in seeing only what you think autism is, you completely miss Alex.

Alex's father loves him as only a father could, but it never crossed his mind that Alex could miss him. He provides support, he buys things. When Alex goes to his house, all he does is pace the floor, knock on the door, and cry for mama. What would Alex care if he wasn't here? People with autism don't have emotions, you know. Everyone who "knows" says so. They are missing that vital piece that makes them human, they are incapable of feeling. I'm telling you, that is not autism and that is not Alex.

Alex is a perfectly normal 11 year old boy. He has light brown hair, blue/green eyes, and autism. A perfectly normal 11 year old boy who misses his daddy.

After conspiring with Alex's mommy, I text his daddy. I told him that Alex misses him, that Alex is sad that he is "all gone" and that "all gone" were the words Alex used. I asked him to stop by on his way home from work one day this week and give Alex the boots he bought him himself, I told him Alex would love that. He was here less than an hour later, ready to visit Alex and to take him shopping for the waffle chair his OT said he loved.

Alex didn't look at his daddy, he didn't rush into his arms or hug him or tell him how much he missed him or even say his name, but the smile on his face said it all. I showed daddy how to work the stroller and packed a small bag with his duck, diaper, and wipes. I walked out with them and watched Alex sitting so well behaved in the passenger seat of daddy's truck, calm and ready to go. The look on his face as he sat there on the other side of the window, watching me wave as daddy climbed into the driver's seat was absolutely priceless.

And, I only called once while they were gone- to make sure daddy knew to set the stroller up before he got Alex out of the truck. I was informed that that was common sense so I put my hands up, backed away from the phone and enjoyed my hour off.

When they got home, daddy reported that Alex was a perfect gentleman all the way up until somewhere on the way home he started crying for me. Alex reported that he did have a good time, he was a good boy, he did sit nicely. I asked if he cried for me, he said "goodbye. goodbye." I said, "yes, you went goodbye without me, didn't you? But I'm glad you had a good time with your daddy." and I asked him, "Do you want to do it again?" His eyes lit with hope, "when? when?" A perfectly normal 11 year old boy who's looking forward to the next time he sees his daddy.

It's hard to let go, especially when their needs are so great, the danger is so real, and the communication is so hard but Daddy is almost 40 years old, a fully grown and capable man. I didn't know how to take care of Alex until I learned. I learned how to take care of Alex because I had to, because there was no other choice. It's about time he learned to parent a boy with autism. Baby steps. One carefully thought out trip at a time. The only thing we need to succeed is Alex's daddy's willingness to see the child that lives there. Autism makes it harder to see, but he is there. He isn't missing or absent. He just can't help you to connect with him as easily as most kids do. Daddy's going to have to learn and I'm going to have to let him because Alex needs him.

Friday, December 6, 2013

Hoarding Comments

I got a lot of comments on yesterday's post that I need to ease up on myself. That I'm being too hard on myself. I appreciate the comments- really guys, what would I do without you?
 
I love comments. I hear them all, I read them all. I don't always respond- I don't know what to say, I don't want to sound stupid, or I'm just so damned tired and I will do it soon. But I hear them all, I read them all, and I love the majority of them.

But here's the thing with comments... there's a dark side. over and over and over you hear the same thing, you get the same judgments. There's almost always a bit of truth mixed in and sometimes you forget the other side of the story- your own side.



Actually showing up at a parent/teacher conference and daring to ask questions- "He's doing much better than he was last year." *pointed look*

Circles on daily reports where I didn't read to him for 10 minutes.

Circles when I forgot to sign.

"Did not turn in science homework."

"Did not turn in Math."

"To be here on time, she should leave earlier like any responsible parent would."

This year's evaluation quoting last year's evaluation, "Notably, on all instruments, Mac rated her son as being more disturbed than did his father, his teacher, or the teacher assistant." (none of whom provide care, might I add. See: "Goofy said he never gets angry with his dad.")

"Mac said Goofy cannot wash himself or his hair independently and, rather than supervising him, she bathes him." (That's not what I said.)

"Moms worry."

"Stop chasing diagnoses, it's a waste of time."

"You let your school aged child watch Friday the 13th? That's 18-rated for a reason."

"The fact that you apparently have the same problems with your other kids suggests you need to start acting like a real parent to them."

"He's a brat."

"He's spoiled."

"You always blame the ADHD."

"You just let him throw his cereal?"

"This place is a mess! What did you do all day!? Well, that was only 2 hours."

"Did you do any laundry today?"

"Did she have a bath yet?" ...it was a bad night, I didn't get to it.

"Does she have socks?" ...I can't find the net-bag.

"They can't have cake for supper." It's FRIDAY! There are no rules on Friday.

"Who's the adult here?"

Library fines that I can't pay because I forgot how long we had the books.

Negative lunch accounts because I forgot I got a notice.

Second notices, third notices.

"Mom, you forgot to sign my folder."

"You forgot to sign my test. Well, where is it? I gave it to you."



It adds up, you know. All those comments. All those excuses. You try and try and it's never enough so you try harder and the harder you try the worse it gets, the more you mess up, the more comments you get until you're spiraling down into I suck at this. All those voices become the voice in your head. You start measuring everything you do by what those voices would say about it and nothing you do is ever good enough.

I know I'm not the only one hearing these comments. I've talked to a few people lately who are drowning in them. I think it's time we make some new voices and start recognizing when we do things right. Maybe I should make a list...



I did not smash my phone when it woke Alex up this morning with phone calls, texts, facebook updates, and tweets letting me know that there is no school because of the snow. (I need a lot of reminders for things ;) )

The Goofy Child, sprinting through the kitchen, stopped suddenly and turned around. He looked directly at me for a second, "I love you."

Walter just shoveled the porch and driveway (with a digging shovel) and cleaned off my car. He helped the Goofy One find his snow boots and put them on so that he could "help" him.

The girl came walking up, so proud of herself, showing me that she dressed herself. "Mawmaw! Me!" *gesturing at her outfit.*

Alex is sitting with his Cheerio's and teething ring, just looking at me. Calm. Content.

and I don't think there were any witnesses when I tripped over my feet pacing the front porch ;)


Yeah... I think I did something right.

It's all about your point of view...

 
"Take a look around and tell me that you don't see
Just a worthless pile of garbage and debris
Cause I see a kingdom - Shining bright
And if you try then you can see it too, yeah
You'll see the beauty, if you look at something right
It's all about your point of view
And life is all about your point of view"

Thursday, December 5, 2013

An Unexpected Blow: Sometimes, size does matter.

"Life has a way of sending sucker punches our way." Yes, it does.

Remember those dreams I have? The ones where there is too much going and everyone needs something and I fail every single time? I lose track of which one I'm supposed to be doing something for or move on to the next kid, forgetting all about the one I was working on? Yeah.

Walter has a teacher that he had last year and every time we talk she mentions "last year." I want to growl at her, "woman, I was busy last year, back the hell off." but I can't even remember what happened last year. I don't know what I was doing. Sitting at Walter's band concert the other night, I was listening to the beginner band play thinking I remember when Walter was there. When he played that exact song. I remember how excited he was and how hard he practiced to get it just right. It was just yesterday... I watch my handsome boy walk onto the stage and take his seat. Is he in 7th or 8th grade? He's in 8th. What happened to 7th grade? Where did it go? I don't remember it. Where was I?

I was fighting for Goofy. In fighting for Goofy, I missed more than I should have.

Today, Alex had a doctor's appointment. I went in feeling like a failure because this appointment was scheduled after I got a letter from his insurance saying he was over-due for his yearly checkup. I knew that had to be wrong because I schedule checkups around their birthdays so I never forget. I schedule an appointment every year. I'm careful because I am so forgetful. I called the office and he hasn't had a yearly checkup since May of 2011. How did that even happen!? I schedule appointments all the freaking time. We are always doing something with some sort of doctor or specialist. So, I go in feeling like a failure already, expecting the usual. You know, yearly checkups are pretty routine- height, weight, vitals, exam, shots and you're out of there. Not today.

The doctor is surprised that it's been so long because of all of my kids, Alex is there the most. Hell, I schedule appointments as soon as his nose starts running. He can't tell me what's wrong, and I don't want to take any chances. So, the doctor was surprised but also understands how it could have been missed. (probably because he missed it too, but I'm going to pretend he was trying to make me feel better.) The next surprise was a big one. The doctor is looking at Alex's growth chart, and sees that Alex has not grown at all since his last checkup. At all. He's in the 5th percentile for weight and the 1st percentile for height. His small size has been tugging at me the past few months. Goofy is almost as big as he is and Walter is huge... but I keep expecting a growth spurt any minute now.

He hasn't grown. at all. How is that even possible? I changed his clothing size with his age. They fit. How could they fit if he hasn't grown? How could he have not grown? What does that even mean? The doctor's concerned that there may be a thyroid problem. He wants to do some tests but first he needs to finish the exam. He checks Alex's ears, his mouth and although we're cavity free for the moment (*shout out to his awesome OT for that one!*) that thing that's been nagging the back of my mind jumps out... his teeth haven't come in. He had oral surgery 2 years ago, I think. Why haven't his teeth come in? There are some that are halfway through and some that are just breaking the surface... the way they have for more than a year. Why did his teeth stop coming in? That could be the thyroid. He wants to run tests.  How did I not know there was a problem when his teeth didn't fully come in? Why didn't I see it for the red flag that it was? What else have I missed?

We walk over to get the blood work and the sign in sheet asks what we are there for. Alex is sitting nicely in his seat, the girl is wandering close, I'm flipping through a stack of papers to see what we are there for. I see orders for CBC with differential and TSH and an x-ray on his hand... celiac... I know that word... I'm standing there confused, trying to place the word, thinking it couldn't be what I was thinking it was, when a woman comes to help. She takes us to get registered and then another woman comes to get us. We go get the blood work, which was horrible. He cried. I wanted to cry. The girl played with latex gloves and stickers. We went to get the x-ray and I stood there, looking at the picture of his left hand and wrist, looking at these lines on one of the bones in his wrist and I wonder if they are left from where we broke his wrist trying to prevent a "fall" when he threw himself to the floor.

Luckily, we got so wrapped up in tests that we forgot his shots so we had to go back and get them. Standing there, getting Alex prepped for the shots, signing my consent, I asked the doctor, "You ordered a test for celiac? Isn't that.." "...gluten..." he finishes for me. "But he was already tested for celiac," it was a while back so I'm trying to remember if there was blood work involved when he tells me that doesn't matter. He can not have celiac one day and then something happens, they get the flu or something, and then they have celiac. I asked him what he ordered tests for. To check his thyroid, he says. Ok, but why? Because he's not growing. But is there something I can google? Not until the results come in, he says. The results will be in Monday or Tuesday and then he will call me and we'll see then if we need another appointment.

I've worried every moment since. Trying to think it though, figure it out. Why wouldn't he be growing? What if he's malnourished? How could he be malnourished? He eats all the freaking time. Breakfast at home, breakfast at school, lunch, afternoon snack, snack at home, supper, snack before bed. During the summer, we were going through 6 boxes of Fruit Loops per week- and that's between meals where he always clears his plate. Now we're down to about 2 since he's back in school, but still... that's a lot of freaking food. Then I think... what if it's the Fruit Loops? Did I give him too many? Did it cause some kind of problem? I know his obsession is a little...excessive but he was still clearing his plates. I gave him too many. I broke him.

What if it's calcium? What if it's because I took him off of the milk? He still gets milk products, he just doesn't drink milk. What if that isn't enough calcium? Could that be why he isn't growing? I should have gotten vitamins. That was stupid.

Or, worse, what if it's not something I did? What if there is something wrong? What if it's something I can't fix? I'm telling you now, if the doctor doesn't give you a word to google... don't google the tests. That gives you all kinds of scary options that are way worse than Fruit Loops and milk.

Still it comes back to where in the hell have I been? What have I been doing that I don't even notice that my kid has not grown in years? Is what I've been doing even necessary? There's still the question of how much of my Goofy One's problems are my fault. If the Goofy One doesn't get an IEP this year, do I keep fighting? At what cost? How do I even decide which one needs my focus most? How do you prioritize your children's needs? How do you handle them all when there are just too many? I should have put more effort into teaching those brats to take turns.

Today, all I have are questions. The answers won't come until early next week.

Tuesday, December 3, 2013

What I Want

When I get hooked up with someone who's looking for help with their child's IEP, the first thing I'm like after hearing their story is, "whoa, stop. wait. Calm down, your emotions are getting in the way." (yeah, me. I know, right?) Today, I got hooked up with someone who's school is trying to mainstream their soon to be kindergartener with no supports. In telling me their story, they asked something along the lines of, is it just me? or, does everyone have to fight because they have no choice? or something like that and my answer was, *snort* you don't read my blog, do you? ;) but then came the important part, my point in retelling this...

They apologized. No time, busy, busy, you know, the whole parenting thing. and I told them not to apologize, especially because with them being new to this whole IEP thing, I don't think I'd suggest reading my blog.

*slams on the brakes*

*looks around*

*Did I just say that?*

*shit.*

I think I just blew my entire reason for blogging right out of the water. But, seriously, if you are getting ready to go visit Europe, I would not suggest watching Hostel before you go. it's like that. exactly like that.

I don't share my horror stories to scare you or to cause you unnecessary worry. I do not share my stories for you to pity me- when I'm having a poor me moment, I will tell you so- or to for you to tell me how sorry you are that I have to go through this. I'm not sorry. It'll be worth it when my children get what they need to reach their full potential. I share my stories- horror and otherwise- for a lot of reasons.

I don't want you to be scared, but I want you to be prepared.

I want you to know that you are not alone. That is very important. When you sit there and face your "team" feeling like you are on your own... no, you're not. You have a whole community of parents who are right there with you. When you feel like you are fighting a battle that you can't win, we are fighting right beside you. You have our support and our understanding just the same as we have yours. When you wonder if the fight is worth it, when you wonder if there is any point, we are there to encourage you to keep going, to let you know that it's not just you. You are not alone. We are all sitting in that seat with you. We fight the same battles, we cry the same tears- happy or sad or angry- we feel it just the same. On your journey, you are never alone. It's never just you.

I want you to be aware that there is danger in blind trust. You can trust your team to a certain extent but never rely on them as your only source of information, as your only resource. Trust your team to have the knowledge, the experience, and the willingness to help your child, but make sure you check what they are saying. Ask for data, ask for explanations, ask for second opinions. Nobody knows everything, not even in their own field, and you know your child better than anyone else does.

I want you to be informed. Fully informed. On your child, their disability, their needs, their educational plan, available services... Know what you want and know how to get it. There is a very good reason autism moms and dads are generally considered to be either batshit insane or ferocious mama/papa bears... or both... those stereotypes were earned because if we do not fight for our children, no one else will, and usually, we have to fight to be able to fight in the first place. Never ending cycle. The best path is to ask nicely and compromise, to work together for your child's best interest but that won't always be possible.

I want you to know and understand your rights, your child's rights. I want you to know and understand that, while I doubt the school intentionally violates your rights (mostly. some do.), there is a good chance that they don't know or understand your rights. If they don't know your rights, and you don't know your rights, who is left to protect and enforce your child's rights?

I want you to know that you have options, you have tools. You don't have to agree with everything the team suggests. I want you to know that you are a vital member of your child's team. You can make suggestions, you can ask for goals. You can help write the IEP. You have a voice. You are not sitting in that chair completely powerless as judgment is handed down, you are more than an afterthought, you are your child's fiercest advocate. Even if you are not invited in as a member of the team, you have to take your place. Let them know that you are ready, you are willing, and that you insist on being an active participant.

I want you to know that it gets hard, there will be times that you just want to sit and cry because you just can't do it but then you will get up and do it anyway because it is worth it. I want you to look at your child and know they are worth every bit of it. I want you to know that you can do this.

Monday, December 2, 2013

Waiting.

Today I just want to talk. I need someone to talk to. Someone who gets it, someone who's been there.

Nothing's really going on, I'm just waiting. I'm not sure if I should be waiting, but I am. The evaluator that we saw told me to go ahead and use her evaluation to get the Goofy One's IEP evaluation started and to just get the OT and Speech evals done before the eligibility meeting. I disagree. I think. I don't know, I'm not really sure of what I'm doing. I'm guessing at it and tossing up a heartfelt prayer that it turns out well. If not, whatever. We'll just try again next year. and the next year. and the next year. Until he gets what he needs or catches up on his own.

I'm hoping this time is all it takes, which is why I think I disagree with her opinion that her eval alone will be enough. I think to trust in that would be na├»ve. I think I need to get everything I can to show that he does need to be evaluated. I think the more I collect, the more likely he'd be to get a serious evaluation. I think with all that I collect, they'll at least know where to look, making it more likely that he gets an accurate educational diagnosis.

I think...

but then I question...

What am I even doing? She is the expert.

and then I think of expert after expert that we have visited and I just sigh. shake my head. Every one of them offers me information that conflicts with everything every other expert is saying, that's if they aren't too busy conflicting with themselves to the point I don't know what they are saying. I sit here with my hand over my eyes, I shake my head, and I hear the original psychologist, "They're punting. They don't know what to tell you." "stop chasing diagnoses, it's a waste of time." "make the school do something." "You know how schools are, they aren't going to do anything until you make them."

I'm standing at a crossroads with only the Scarecrow pointing the way. "That's funny. Wasn't he pointing the other way?"

and so I sit. and I wait.

I sit and consider the Scarecrow, I sit and consider the options. I sit at this crossroads surrounded by poppies and I just want to close my eyes for just a minute. Just a quick nap, just a little... and this whole time that I am sitting and waiting, falling under the spell of ... not ... nothing is getting done. You can't get anywhere when you're sitting on your ass.

It is so hard for me to do nothing. I need to move, I need to act, I need to do something. I can't just sit here and wait. Wait for what? No one is coming. Just me 'n' the Scarecrow sitting here at an impasse. The longer I sit and look at him, the angrier I get. I need to move, I don't have time to sit here decoding riddles.

I saw a friend toss a quote to another friend today, "If you're not angry, you're not paying attention." True. and I'm angry. Angry at the Scarecrow, angry that we have to fight in the first place, angry that it's just so damned hard. I'm angry but that anger is not going to do much good on it's own. You can run into battle with all the passion and fury your heart can hold, but you will still lose without the weapons to fight.

and so I sit. and I wait.

Like the lioness pondering her prey, waiting for the perfect moment to pounce into action.