IEP updates

   March was crazy, thankfully April seems to be getting better. Nixon had a horrible month at school and I was having a rough time at home dealing with all the crap that kept coming happening because apparently even though Mac is gone Life didn't realize I didn't need a crap ton of lemons poured into my lap.

   Last week Nixon had spring break. Well, he had school on Monday and then his spring break began. Spring break lasted through Tuesday of this week, which was not his best day back to school. even on his break he had rough days. He had a meltdown at the mall over lunch....freaking lunch! I was asking him what he wanted to eat after he asked if he was hungry. He spent most of his break telling me I'm asking too many questions, resulting in him going quite rigid and tensing his entire body.
   We did have some good times. We had a lovely Easter morning, spent a couple lazy mornings in bed watching TV together and found an alternative to the aquarium visit because after the mall fiasco that was pretty much off the table.

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    Yesterday was my IEP reevaluation meeting. It was supposed to happen in March, but snow days and spring break pushed it back five weeks. 

     I was stressed about this meeting. I'm very unimpressed with Nixon's treatment and assistance at the school, even with after I gave my cellphone number to the aide with a request to be contacted whenever a meltdown goes beyond a point that they feel they can handle anymore. I had warned the IEP board in January, that March was going to see Nixon most likely experience a behavioral regression due to Mac's departure for his 13 week training course. My warnings were forgotten and Nixon's behavior did in fact regress to a point far worse than even the beginning of the year. It doesn't help that there are days the schedule changes 2-3 times throughout the day. To most kids, this is no big deal. To Nixon, this is a trigger for a meltdown. He needs routine, time to prepare for changes, time to process and time to cope. He's not getting any of that. 

   The IEP he currently had, allowed for 1 hour out of his classroom for a one-on-one learning setting. This was, at my insistence, supposed to be given during the bulk of the learning at the beginning of the day. Instead it was being given whenever it was convenient and usually at the end of the day,resulting in Nixon being uncooperative/agitated and often perceived as angry, when really he's so overstimulated from the changes throughout the day he can't handle any more changes.   

    

    The result of the meeting ended up being something I felt all along: Nixon's current school is not a good fit nor are they properly equipped to provide him the assistance he needs. This actually came from a member of the County's Central IEP Board.
   But there's a larger problem.

   Nixon's behavioral issues require him to be in a smaller, more personal classroom setting. A special Education setting, ideally. However, Nixon's educational needs require him to be challenged more than he would be in a Special Education classroom. Nixon is a puzzle that the Central IEP Board is looking to solve. He's academically bright, at level or above level, in most subjects. It's his social and behavioral developmental needs that are presenting the larger issues. And his school haven't the proper resources to help him. 

    Unfortunately, none of the public schools in our county can't meet Nixon's particular needs. 

    Which leads us into new and further uncharted waters: The Central IEP Board take cases like Nixon and with the help of the school, parents, and other professionals they find a private or charter school that is a good fit and will meet the needs of the student and work to place them there, with no expense to the family. The home school (in this case Nixon's elementary school) funds the tuition, and if the child meets the requirements will be able to return to the school when ready.

    There's a process, much like college applications, as it was explained to me. The Board will interview Nixon, the school counselor and OT who has worked with him, myself (and Mac if he's back) and his teacher. I believe Nixon's principal will also speak to the board, at her own request. 

    While I can't say I feel overjoyed by this newest development. I can say it will most likely result in an educational setup that is in Nixon's best interest, and that is all I want. 

     This whole situation: Nixon's diagnosis, his behavioral issues, his school's view on his actions, how he feels about his school's views and more, it wears on me. Facing that meeting alone, knowing there are adults in that room who can't (and don't try to) understand Nixon and how his mind works, instead constantly insisting his actions are planned and of a conscious nature, caused me a deep moment of anxiety. I spent nearly 10 minutes simply explaining "scripting" and Nixon as a result of Mac and I creating scripts for Nixon. 

   *Scripting is common in high-functioning autistic children and adults. They develop scenes or scripts to follow for events, and do so. Nixon's well-mannered because of his scripting. He also, when he calms down after a meltdown, apologizes. But he's not apologizing and admitting he was aware of his actions. He's apologizing as a reaction to the faces of those around him and because of the script he has in his head that he follows. Unfortunately, most people don't know about scripting and they just assume Nixon is accepting responsibility for his actions by apologizing. And I saw my explanation fall on some deaf ears in yesterdays meeting. I also had 2 administrators ask me some questions after the meeting, about Nixon and his "scripts" which made me realize my short advocating speech wasn't totally pointless.*

   I don't know what the rest of the school year will look like. I know there are members of the school administration who would like to keep Nixon out of the school effective immediately. But that's not really possible because it came to light that the school was implementing his IEP plan out of convenience to their schedule instead of the requirements of it to his needs. And that came out in front of the Central IEP Board representative. Had the school been doing everything to the letter in regards to his IEP and nothing was working, then yes, perhaps they could have expelled him. However, since that's not the case they cannot do that at this time.
    Thankfully, I'm the parent that doesn't know shut up and get with the program! Instead, I spoke up, I made sure I spoke up and I kept speaking! I didn't make friends, but I have a few supporters in our corner and they're on the county's payroll not the school's. They're the ones who can help Nixon the most and help do what's best for him. 

Tuesday? Monday? Who can tell anymore...

    Yesterday was a snow day. There wasn't any real snow, but it was very icy and very dangerous. Snow day 4 of the 5 built into the school districts schedule.
    Because of Nixon's snow day he was able to go with me and take Mac to the airport for the second time. This time we did a curbside drop-off. Nixon was very fine with the drop-off. Nixon was great at home at dinner. He was fine at bedtime. In fact, he brought me the teddy bear Mac made for him (after he as supposed to be asleep) and said "Mommy, here. You can press the paw right here to listen to Daddy's voice if you miss him." I tell him that Capt Bearmerica is his bear and he says "I know, but Daddy didn't leave anything for you in case you miss him."

   I wake up and Nixon is in bed with me this morning.

   We had an easy morning this morning. Up, fed, dressed and out of the door with no issue this morning. Shocking! After we arrive at school, as I'm dropping him off with the teacher's aide I give her a heads up about Mac leaving yesterday, and I leave him at school. Hoping for the best.

   His first really great day in a couple weeks! It was a full day and he came home with 8 of 9 smiley faces! He spent only 10 minutes out of class.

   What some people may not know about children on the spectrum or with SPD is that, when these children get overwhelmed they may not want any kind of touch. Nixon has not ever told me to not touch him.

   Until tonight. 

   He came out from him bedroom, crying. He'd been in there and asleep for about an hour before this. I called him over and asked him what was wrong. He said "I can't find sleep." Usually, when he's upset about anything, he'll curl up on my lap and listen to my heart while he calms down. Tonight I try to get him comfortable and he pushes me away. I stop. While a part of me aches to comfort him, I need to do it on his terms. I ask him if he doesn't want to be touched. He tells me "no touching, Mom". I ask him if I can wipe his tears, which he agrees to. I get him calmed down and he asks to sleep in my bed, on Mac's side. I don't care, it's a bed big enough for the both of us, as long as he gets sleep. 

It was bound to happen some time soon

 

   This was yesterday's behavior sheet. Nixon had earned Lego time, which he was going to get today.
    Another 2 hour delay (weather again) and Nixon was in a great mood and ready to start when I dropped him off. He had a great morning, finished his work early enough to play with the Lego's before lunch time...and it all went down from there. 

   He could not pull himself together after having the Lego's taken away.  This is one of the roughest days he's had in quite a while.
    Today also happened to be "Welcome Wednesday", when parents are invited to have lunch with their kids at school. It's always chaotic and I never attend. My reason is simple: Nixon doesn't need me to come to school for 25 minutes and leave, it'd be difficult for him to adjust after that. I see him at home, he can have school as his time without me. It's not that I don't love him, I just want to keep his routine as unchanged as possible.  

   His day ended with the aide coming to get me to help get him out of the classroom. Nixon was refusing to leave, dead weighting and screaming. I walked into the room and he was sitting quietly next to his teacher, jacket on. He saw me and tried to hide inside his coat! Literally, pulled his head inside the chest part and tried to zip the coat up while he was buried in it. I stood back and let him do it. I wasn't talking to him yet.
    He finally said "Hi Mommy. I'm not going home today". I walked over to him, crouched down so he could see my eyes and hear me as I whispered to him. I don't yell at him in school (I'm not going to lie and say I never yell at him. I'm a parent and I'm not perfect, and this kid can push every button I have. Yelling happens). I did talk to him, very quietly, and asked him if he wanted me to "carry you like a baby in front of all your friends?", of course expecting him to say no. Instead he said yes. So I lifted him arm under his knees and around his back. As I'm carrying him his teacher stops me. Now, I'm trying to get Nixon out of the class without him screaming I'm not exactly in a place to have a conversation with her.
    But it wasn't awful. She apologized again, complimented me for being able to work with Nixon and manage to keep him from screaming (I want to get her ear plugs on some day, Nixon's pitch is evil!) and thanked me for the peanut butter glitter jar. The conversation wasn't as painful as I thought it may have been. 

   The only other awful (disgusting) thing that happened was, apparently, at one point during Nixon's afternoon he decided to pick his nose and try to wipe it on his friends. Of course, kids were laughing and Nixon kept it up until removed from class for a moment. This is so gross! Sometimes he just comes up with things, impulse actions, without any thought before acting. This is one of those things. 

    Just one more thing. I know the difference between Nixon having a rough "Aspie" day and Nixon just acting out to get his way. Today was an "Aspie" day. He came home, did a little reading and crashed in his bed for an hour-long nap. Exhaustion at the end of a difficult or bad day is the telltale sign that Nixon's behavior was more Asperger's issues than ADHD acting out.