Jumping Over Heads

One important lesson I have learned over this Summer:
If you don't get a response for over a month from the IEP Chairperson and SpEd Director regarding an email you sent them TWICE, CC the Superintendent and you are bound to hear back much quicker!!!

I had some concerns regarding Honeybunches that I needed resolved prior to the beginning of school. I sent one email on June 11th and again on July 20th. Neither were answered. I gave the school personnel the benefit of the doubt, thinking maybe they actually aren't at the school for part of the Summer. Yesterday, when dropping Honeybunches off for his ESY tutoring, the IEP Chairperson was outside and said "Hey, how's it going"? His presence was known at that point, which caused me to have mixed feelings of frustration, disappointment and "Got cha"! Today, I wrote the same Email again, CC'ing the Superintendent. I also sent her another email with more info about Honeybunches. This time, I heard back from the IEP Chairperson within two hours. I don't usually like to step over heads, because it causes certain members of the school district to get defensive. Sometimes, it must be done. Over the years, it's gotten easier for me to learn how to not play Mrs. Nice Lady and worry about everyone's feelings. Honestly though, there still is that little piece of me that cares. Then I have to step back and think "What will matter in 5 or 10 years"? Will it matter that the school personnel knew me as "That" Momma? Will it matter that I might have gotten people mad, upset or angry with me? The answer to both of those is a big fat NOPE! What will matter is that I did my best to get Honeybunches the help he needs. Sometimes, that might mean bumping or jumping over heads in the process.

Hopes and Fears

---"The central struggle of parenthood is to let our hopes for our children outweigh our fears." (Ellen Goodman)

I was going through old quotes this morning and came across this one. Think about what it says for a couple minutes. Break it apart piece by piece. "The central struggle of parenthood..." We sure have a lot of struggles don't we? "... Is to let our hopes for our children..." We all have high hopes for them. It's important to believe in them. They need us on their side, even when nobody else in the world is. We hope that they shoot for the stars and if they miss, at least they can touch the moon. "... The central struggle of parenthood is to let our hopes for our children outweigh our fears." As parents, we all have many fears for our children. Which are stronger in your journey? It can be so hard to not let our fears outweigh our hopes, for it seems they are more deeply routed in our hearts. Let's break this down a bit more:

My hopes for Honeybunches are:
-That he'll grow up to be a respectful citizen.
-That he'll learn more coping skills to get through life.
-That he'll learn to advocate for himself.
-That he'll continue to get the help he needs in school.
-That he'll follow his dreams.
-That he'll accomplish whatever he sets his heart to doing.
-For him to one day find a wife who can tolerate him and for him to have a family, if that's what he chooses to do. 

My fears are that:
-He'll become unstable during the teen years, needing to be hospitalized again.
-That if he becomes unstable in the teen years, he'll likely be stronger than Momma. (Note to self: Begin lifting weights soon lol.)
-That he might end up in an RTC at some point.
-What if he gets older and decides he doesn't need his medications anymore. 
-What if the school can't handle him?
-Who will care for him when I'm gone?
-Will he be able to live on his own?
-Will he be able to hold down a job?
-Will he graduate, or be educated until age 22 and just receive a "Certificate of Completion" (Which would not be the worst thing in the world, but is still something I often wonder about.
-What will happen to him when he does turn 22 and all the services from the school district disappear?

I have many more fears that often take residence in my mind, but those are the ones I could think off quickly. It's hard to not let all those fears outweigh the hopes. They tug on the heart strings more than the hopes do. They take over my mind, causing worry and anxiety. I try to let Go and give it to the man above, but honestly I need to work on trusting him more and letting go of my control. There are some things in life that we're not in control over, so why do we worry about them? Back to the quote, the struggle is real. We do have to keep hope though, because sometimes in this journey it's all we have left. Our children need us to believe in them.
~Honeybunches' Momma.

Honeybunches July 2015 Update

Thankfully, we were able to get Honeybunches back on the name brand Abilify. His psych nurse practitioner said that was thanks to my mood charts. Summer is going well for the most part. We successfully survived four nights at a motel at Hampton Beach (Which is right on the Atlantic Ocean) where we had lots of fun. The ocean is my happy place, where I am so relaxed. That's one place where I honestly did not mind waking up at 4 am, because of the beautiful artwork nature created on the beach at low tides in the morning before 1000s of footsteps trample over it. It was amazing! There is a quote by Amy Dykens "--It is hard for me to put into words why I like the beach so much. Everything about it is renewing for me, almost like therapy." That's exactly how I feel! Here are some examples of nature's early morning artwork:

The weekend of the 10th, Honeybunches, Daddy and I went camping at a favorite local campground for his birthday with Auntie R and her boyfriend G. We did things different for his birthday this year. None of his classmates ever come, so this year we didn't invite them to save some heartache from happening. We had a great time. We invited lots of family and some members from our old church. That was the biggest turnout he ever had at his party. We had lots of fun, although at times it seemed like too much for him. He had moments where he got overstimulated and needed his space. I don't think certain members of my family understand that concept. Overall, things went very well though.

It's hard to believe in five weeks my baby boy will be in middle school! I have so many concerns about that, as you can read in previous posts. Middle school is like a whole new world, especially after being at the same elementary school for the past seven years. He begins ESY tutoring today, with a teacher he'll have for Reading and Math. It's only 2 hours per day, M-Th for four weeks but hopefully it will help him not regress so much (Although it would be hard to document this year with teachers who are not familiar with him or where he was academically in June).

Generic Abilify

Mood Chart and Records

April-June 2015

	See the pretty blue line in April? That's the day Abilify went generic. See the differences in the before and after? It's clear that his moods, irritability (Blue triangles and rectangles) and anxiety (Yellow triangles and rectangles) all changed. His psychiatric nurse practitioner sent these mood charts and mood journals to the insurance company along with some additional paperwork and wrote a script "Dispense as Written: Name Brand Medically Necessary". Now it's a waiting game to see if the insurance improves it. This is our life the past couple months:
	Mood Journal 06-23-2015:   Good day. A little irritable and a bit sad (About losing his $$) but no major issues. 06-22-2015:   Good day. Anxiety at school graduation, but participated and stayed in the auditorium through the whole thing without any issues. (Was shaking a lot afterwards.) 06-21-2015:   Good day. 06-20-2015:   Good day. 06-19-2015:   Good day. A bit depressed in the evening regarding going to middle school in August and missing a certain class aide he's gotten close to. 06-18-2015:   Good day. A bit grouchy. 06-17-2015:   School: "Acting like a monkey noises during morning meeting". Had refused to participate in field day or even go outside until Mom came. "Too many kids" he told me. He did sit with me, back away from the festivities a bit. He chose to participate in 1 activity in the morning (Out of 8) and one in the afternoon (Out of 5). Lots of sensory seeking, kicking sand/woodchips, rocking, moving feet back and forth on ground, tons of different animal noises, silliness. Did go into time out space in afternoon (Upset he could not find his chair). While in time out, opened and closed door which disrupted the class and was unsafe. Stopped on his own after a few minutes. Home: Good morning but silly. Afternoon went well, although silliness persisted through the early evening. 06-16-2015:   Lots of anxiety this morning on way to school. Chewing fingers. Good day at school. Picked up early for an appointment. Sensory seeking today (Touching everything). Hyper, but well behaved. Tons of energy. Silliness. Animal noises. Singing commercial songs. **SCHOOL DIDN'T GIVE HIS NOONTIME TENEX. 06-15-2015:   School: Refusals (Morning recess, afternoon recess); reported he was "Cranky" as he "Didn't sleep enough"; Became upset when he didn't earn stars (Began writing on table with a sharpie and scratch the desk); Became upset he couldn't do what he wanted at sensory time, so began to escalate again. Principal had to come down to clarify expectations. Home: Irritable in afternoon. Good evening. Woke up night before to use bathroom and change self. Went back to sleep rather quickly though. 06-14-2015:   Good day. 06-13-2015:   Awesome day. 06-12-2015:   Daily sheet says "...didn't do so well today. He never went out for recess and did not do much work at all. He only drank about 9 oz of water because he poured one out on the floor and so I took the other one. He ripped up papers, banged things and was very disruptive at times." 06-11-2015:   Orientation at middle school today. Anxious. Overstimulated. Biting nails. Zoned out. Couldn't handle overstimulation in cafeteria so I took him in the hallway. 06-10-2015:   Awesome day. Only issue at school was refusals. 06-09-2015:   School: Good day. Home: Good afternoon and evening. Good job at counseling. Seemed restless today and full of energy. Fell asleep at kitchen table. Tried 3x in an hour to get him to go to bed. He refused. He kept talking stuff that made no sense. He was sleep talking I think. Rage came out of nowhere on our last attempt. He kept saying "Off me" and to leave him alone. Natasia tried bribing him with going for a walk tomorrow. That did not even work. Daddy finally escorted him to his room where he was trying to rip his sheets, hit Daddy with a pillow pet, hit himself with it a few times in the face pretty hard and called Daddy a "Bitch". 06-08-2015:   A couple small struggles and refusals at school this morning. Fine all afternoon and evening at home, but full of energy. 06-07-2015:   Irritable today. Very hyper. Kicking socks across room. Stepping on Princess feet on purpose. In everyone's personal space. 06-06-2015:   School: A bit upset another child said he'd bring a ball but didn't, ripped up star charts, lots of tapping on desk. Home: Screaming silliness, lots of noises, "Jack" was with us (He escaped from jail). Issues listening. Hyper. Used some not-so-nice (But not "Bad") words. 06-05-2015:   Slept 9pm-3am. Went back to sleep from 4am-6am. Very hyper this afternoon. Screaming and making all sorts of noises on the way home from school. "Jack" (Either an imaginary friend or person who shares his body) was with us for the ride. He hadn't been around for a while. He told me he was in jail, but escaped. Day sheet says how he had a great morning, but got upset at recess "As he thought + another student said he'd bring in a kickball and didn't. That set his afternoon on a different path. He ate, but after lunch was over for our class he ripped up his star chart for the 3rd day in a row. He was just writing and tapping for a while." 06-04-2015:   School: Great day until 1:15. At that point he ripped up papers and made threats to turn over desks and tables (But didn't do it). He seemed to be worried about technology. He was able to regroup, discuss and made a plan B for when upset. He then got right back on track. He chose to refuse PT today" Home: VERY irritable most of the afternoon and evening. Seemed a bit down too. 06-03-2015:   School:Did not want to eat lunch in the cafeteria, so he just sat at his desk. At 11:50, it became clear he would not budget so I got his lunch for him. He ate it and then brought his tray back + got his medication. He never got out for recess. After lunch, he got back on track but then changed his mind about what he wanted to do + an issue with line order arose. He protested and eventually ripped up his star chart. However, he went to music OK and did Word Of The Day. He was our line leader..." Home: Afternoon was irritable, but no major issues. 06-02-2015:   School: Refusals, tipped over desks and chairs, time out from 12:20-1:15. Home: Irritable in afternoon, but no major issues. 06-01-2015:   Day sheet explains how he is back on yellow. He had a good morning, but had difficulty choosing an activity at incentive time, struggled during indoor recess, demanded being able to put together a volcano and explode it (Which is not possible at indoor recess... didn't want to play games, draw or read which were other choices), poured his water on the floor, tipped over a desk and chairs (Picked up the items after he calmed down yet refused to acknowledge the consequence for his actions), had a difficult afternoon with lots of refusals and again tipped over desk and chairs. Evening pretty good. Impulsively hit the dog once. No other issues. May 2015 05-31-2015:   Honeybunches had another good day! He was a bit hyper today, was playing "Rocket" kicking the dust pan, pretending a bag of cat treats was a bomb dropping it on Princess' head and other little stuff. At one time he did lose a star for throwing a lollipop at the dog on purpose. 05-30-2015:   Awesome day. 05-29-2015:   This morning, Honeybunches got upset with the dog. He was trying to pet Brownie, but Brownie growled at him so he slapped her. He lost a star for not using nice hands. Hyper and silly in afternoon. 05-28-2015:   Good day. 05-27-2015:   Silly day at school and ripped up star chart but no major issues. Good afternoon. Seemed a bit anxious. Lots of rocking side to side when visiting the middle school. This evening him and his sister were playing. When she was done he had trouble regulating again. Began pushing the table back and forth across the kitchen. Natasia was sitting at the table eating salad. He began pushing the table into her chest. Continued pushing table into her. Escorted to his room. Kicked the dog on his way by. Rhymically banged his door against his side table repeatedly. Threatened to choke to death in the night. I forgot his exact words but he mentioned not being able to control what was going on. 05-26-2015:   Day sheet from school says: He became upset and refused to go to Art. He was tipping his desk back +forth and then stopped after a few reminders but eventually he started again so I took it away." Went into the time out space when upset, took off his belt and was informed by the teacher if he hit anything the teacher would take the belt. He said he'd take off his pants. He hit the window with the belt, teacher took the belt, Honeybunches took off his shorts. Thankfully he had boxers on. Hard time at counseling all because he could not have a pen. Throwing objects, trashing the office, tried to bite me. 05-25-2015:   Good day. 05-24-2015:   Good day. 05-23-2015:   Good day. 05-22-2015:   Extra cuddly. Singing in bath. 05-21-2015:   Mom and Dad not getting along so well today. I think he felt the tension. (Related to Daddy's Bipolar.) 05-20-2015:   Hyper and silly today. 05-19-2015:   Some refusals at school. No major issues. 05-18-2015:   His daily sheet explains how he refused to go with specialist this morning; refused to have snack; refused to do his math assignment; continued noncompliance resulted in a significant amount of stars not being earned; "Upon realizing that he would not be able to move off of yellow level, he proceeded to destroy the level system board (All papers were ripped up and shoved into the heater). His star chart was also put into the heater... This means it can not be replaced. At 12 he was able to get back on task. Unfortunetely at 2:!5 he refused to do cursive assignment. 2:30 refused incentive work "I'm not doing nothing" (He said)..." Irritable at home in afternoon, but no major issues. 05-17-2015:   Awesome day. 05-16-2015:   Good day. 05-15-2015:   Rough day at school. Teacher out. Refused lunch. Got called to pick him up at 2 pm. Broke computer monitor in pieces with a pad from the time out space. Went in time out space. Broke pencil. Drew on floor pad. Bit own hand leaving mark. Began when aide told him to carry ball inside and not kick it. 05-14-2015:   Good day. 05-13-2015:   Good day. Please Note: Abilify generic began on May 13th. 05-12-2015:   Few struggles at school today. Had to change classes at school because of PARCC testing. Got upset about that. Ripped Music teacher's poster. Had to serve time out. Afternoon and evening good. Anxiety school related. Irritability related to changes at school. 05-11-2015:   Good day. 05-10-2015:   Family party. Overstimulated. A bit irritable in evening. 05-09-2015:   Awesome day. 05-08-2015:   Good day. 05-07-2015:   Okay day at school but had a couple issues with walking feet, then getting upset that another child in his class who was the only one with walking feet got a sticker on his car for doing so. Didn't participate much for an hour or so. He was being "Unsafe" tipping his desk over and had to serve a time out at his desk. Fine at home. 05-02-2015:   Good day. April 2015: Unless otherwise specified, was a good day 04-30-2015:   Good day. A bit silly. 04-28-2015:   A bit silly. 04-24-2015:   A bit irritable, but it was an overstimulating day at the Boston Museum of Science, where he said "People keep getting in my personal space". Very overstimulating, noisy, crowded, etc. Did a good job controlling his body though. 04-01-2015:   His day sheet explains how he had a good morning, but the afternoon was difficult for him to stay on schedule. He refused lunch and did not follow his music contract, so did not earn his incentive time. Very hyper. Hopefully this will help him get the name brand again, although I am doubtful based on past experiences with Risperdal when that went generic.
	Honeybunches will have Summer tutoring 2 hours per day, 4 days a week for 4 weeks with a one week break in the middle. A teacher from the middle school who will be doing his Reading and Math will be doing it this year. I'm still waiting to hear what dates that will happen.