Magic #

We have a magic # with Honeybunches. It's called "1.1". 
Can you guess what it is?
It's when moods are not swinging and life is more fun.
Times are not so rough his motor is not as fastly run.
Manic thoughts don't fill his mind.
He doesn't need to try as hard to be kind.
He's more in control of his actions and words.
The things that he does aren't so absurd.
Tears don't fill his eyes as sadness rips apart his little heart.
Wishing we had found this magic # in the start.

The magic # of 1.1, can you guess it anyone?
It's the magic of a pill, a wondrous pill called Lithium. 
It takes away the sadness and calms the manic side too.
Yup, all that I have said is true.
The magic # we found again!
Oh how I missed you 1.1.

Honeybunches pdoc called this afternoon.  His Lithium level is now again at our magic # of 1.1.  Adding the little 150 mg pill worked.  This is always where he does best.  He had one of the best counseling sessions in the many years he's been seeing L. He talked about feelings, used his imagination and did an awesome job!  Today was much better at his Summer program too.  I'm thinking yesterday Honeybunches was most likely just testing Mr M.  He has always liked to study and test people to see how they react to his behaviors. Even when he was an infant he just gave people this curious look and seemed to be studying them.  It's hard to explain. Honeybunches has even been waking up the past week to use the bathroom at night, going right back to bed and not being as wet in the mornings!  Incontinence has almost always been an issue with him.  He wasn't potty trained at all until age 4 1/2.  Then accidents were so frequent that he chose to wear Goodnights until age six.  From that time he's had issues with night time wetting except for a six month trial on Desmopressin, but after six months it just stopped working even though they raised the dose.  That's back when he was six-years-old.  We even brought him to see a Pediatric Urologist at that time who said his incontinence was related to his Autism and other delays.

Day 1 of Summer Program

Today was the 1st day of Honeybunches' Summer Program.  As I mentioned previously, this week was just him and the tutor 1:1.  He went from 9-12.  Mr M said he made it until about 11:45 but then began pinching and kicking him.  Before that he worked hard.  I asked Honeybunches why.  He said "I had enough".  I asked if he was mad at Mr M.  He said "No".  DH thinks that maybe he doesn't want to be at the program while the other children are free to do what they want with their Summers.  IDK. This week is more learning stuff, but from my understanding next week is going to be more social skills.  The Summer Enrichment Program begins for other children next week.  Next week there will be one other boy working with Mr M and Honeybunches.  I'm curious to see how that goes. I never know what to do sometimes.  At the beginning of this year when we had his IEP meeting back in October Mrs Understanding said that Honeybunches regressed with his reading a bit over last Summer.  I didn't want that to happen again this year so pushed for tutoring.  When I picked him up he looked so sad.  I never know what is the right thing to do and what isn't.  Sometimes what I think is best might not be, or at least might not seem to be at the time.  I guess we'll see how the rest of this week goes and how things go next week when other children are in the mix.

Holland and Beirut

Welcome To Holland
by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever  go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland

Celebrating Holland- I'm Home
By Cathy Anthony

(my follow-up to the original \Welcome to Holland\ by Emily Perl Kingsley)

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger, the pain and uncertainty. Inthose first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined! 

 

WELCOME TO BEIRUT by Susan F. Rzucidlo

(Beginner's Guide to Autism)

"I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It's like this.."

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "YOUR CHILD HAS AUTISM"!

There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired". Bullets whiz by "refrigerator mother" " A good smack is all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery". You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You've done everything right in your life, well you tried, well, you weren't caught too often. Hey! you've never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She'll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out ( early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed.

There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and odd sense of humor. Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You're excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen. You're exhausted because your child doesn't sleep.

And yet, hope springs eternal.

Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they'll understand, they are living through similar times. For those people you will be forever grateful. Don't get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place.

But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again, but hey, what fun is normal.

Determination

Last night Honeybunches had to fast for his labs this morning.  I told him about 7 pm to have a snack and drink.  He was too busy trying to catch some wild bunnies outside so he said he didn't want it.  Well at 8:20 when he finally came inside.  Then he decided he wanted to eat.  "Nope sorry Honeybunches.  Now you can't because you have to go to the lab in the morning."  He was not happy. He fussed for about 3+ hours.  "I'm thirsty.  I need a drink.  I can't sleep until you give me one." I kept telling him he could have a few sips of plain water, but he didn't want that because he said plain water is nasty and "It taste nothing".  He threw a few things around his room, but didn't get aggressive. Finally about 10:30 he had his few sips of plain water and went to sleep.  He sure is a determined boy.  He literally didn't stop screaming, crying and fussing for 3 hours.  Hopefully one day he will put all that determination to good use lol. Things at the lab went smoothly.  His favorite lab tech was there so he did fine.  She always finds his veins the 1st time without going digging like some of the other techs do.  After that we came home so he could eat breakfast and then brought him to his 1st day of the Summer program.  This week is tutoring with just him and Mr M.  Next week he'll be with one other boy and work on socialization skills for those next three weeks.  Anyways there was a horrible thunder storm this morning.  We had power here, but when we got downtown the traffic lights were not working.  There was no power at his school and the security alarm was sounding off. Mr M and I decided it would be a better idea to reschedule today for Friday because the school was dark black inside.  I have a headache from last night.

Summer is here!

On Wednesday Honeybunches had his appointment with the pdoc.  This was the appointment I thought we were going to have to be prepared for with med changes in mind.  I thought we were going to have to change his Abilify to Geodon, as this is what the pdoc and I discussed previously when I called her about his Tardive Dyskinesia symptoms.  I researched, asked in my online support groups and found out everything I could about Geodon. 

Then the appointment came.  She was impressed with how great Honeybunches is doing.  These past couple weeks he began using his imagination!  That's right, my boy with Autism has begun using his imagination!!! He plays police, which is one of his favorite games as he loves arresting people and his stuffed animals. Now he has an imaginary boss who he has to call to check in with, get orders from, etc.  This is HUGE for him!!!

Thankfully on the higher dose of 1 mg Cogentin twice a day and the lowered dose of 1/2 tab 10 mg Abilify per day his TD symptoms are gone for now.  The pdoc suggested that we also give him 1200 units of Vitamin E per day because I guess that's supposed to help with TD too.  That's on my agenda to research today. 

It's been horribly hot here, in the mid to upper 90s for the past two days.  Today is supposed to be nasty hot too again in the 90s.  We've been giving him a Gatorade/PowerAde every day and thankfully getting him to drink water has not been a problem.  He loves playing outside and refuses to stay in all day, but thankfully yesterday he was fine with coming in for frequent breaks.

Summer Vacation's Begun!

Summer Vacation has begun!  Thursday was the last day of school, which was a half day.  Honeybunches was good that day, Friday and even yesterday.  Today Princess, Honeybunches and I walked to church. He did fine for a while.  Then in Sunday School he began acting up, ran out of the classroom and we had to search to find him.  He was in a closet hiding.  Then I had Princess stand with him for a quick minute while I went to the bathroom before walking back home and he tried to bite her.  He made some good choices on the way home, although he was frustrated with me because I would not let him stop at the railroad tracks, nor go that way home because of his behaviors.  At one point he said he was not going to walk anymore and I'd have to call Daddy.  Then I told him that I would walk him back to the railroad tracks, but that would be the last time we went there ever, or he could make a different choice, walk home nicely and we'd go back in the morning because tomorrow is a new day.  He thought for a minute and then decided to walk home.  We made it back here without any issues.

Then I let him go to Walmart with my brother and mother.  Right after they left something told me that I should have gone too.  I just got really worried.  When they got home I learned I had good reasons to be.  Honeybunches got mad on the way out of the store because he could not use the crane machine.  My mother already let him spend $7 when he only really had $5.  I guess he refused to get in my brother's car.  Then on the way home he was pinching Princess, pulled clumps of her hair out she showed me, unbuckled her seat belt, pinched her leg really hard, tried throwing her MP3 Player and cell phone out the window, was banging the windows, etc.  My brother said he will never take him anywhere again.  He came upstairs and went to his room for a while.  Now he is playing outside what seems to be calmly again.

Angel is grounded again.  It turns out that Shnooks was in town on Friday night.  Angel was supposed to be sleeping over her friend H's house.  Then she calls me to tell me that she's sleeping over L's house instead.  H's mom called me to tell me that Angel and L refused to get in her car when she went to pick them up.  She also told me that Angel said Shnooks was in town and she was spending time with him.  Angel denied this to begin with.  Then finally she admitted that she was with him for 2 hours.  Shnooks has no business being with my children.  Oh and get this... a few weeks ago I wrote about a situation with this little girl H my mother used to take care of.  It was that little girl's mother's house that Shnooks was staying at! Lovely!!!

 I am really missing my Daddy today. I know he would not want me to be sad though.  I cried for a few minutes.  Then I heard him telling me to stop it because he was okay now.  :(  This first Father's Day without him is a bit hard.  I know that he's up in heaven looking over us though.  My Blazer has been acting up lately.  We didn't have it from two Friday's ago until last Tuesday.  It needed a new radiator.  Then Wednesday we did some errands in the morning.  It was fine.  During one of those errands I found a $50 bill on the ground.  It was soaked because it was pouring out.  There was nobody around in the small parking lot of the grocery store or I would have given it back.  Nobody was there.  Later that day my Blazer refused to start on the way to Honeybunches' pdoc appointment, his counseling and Princess' counseling appointments. I think my father sent me that $$ as his way of still helping me.  He always could fix everything and always helped me fix my vehicles.  Thanks Dad!  I had the blues these past few days.  We were supposed to be at the campground.  I had reservations before the Blazer died.  I guess there is a reason for everything although we don't always know what it is.  Princess' counselor cancelled her for missing 3 appointments.  She was not understanding at all that 1 of them was because my father died the day before, or that the Blazer would not start.  She didn't seem to care.  Princess was supposed to get a paper filled out by her and by the Dean at her school.  Neither happened so the probation officer for her CHINS won't be happy about that when we go see her again.  I guess I'll call somewhere else and try to get her in for counseling again.  Honeybunches pdoc appointment got rescheduled until Wednesday this week.  We never got to the lab to get his blood work yet, because we didn't have a vehicle.

Field Day... Talked to pdoc

Today was field day at Honeybunches school.  He participated almost all day!!! That's the first time that happened.  In 1st grade he would not participate at all.  Last year he made it a couple hours, but this year he made it all day.  :)  I didn't get there until the 1 pm because I had other obligations in the morning (Princess had court for the school CHINS that they continued until next month b/c she had some small issues at school last week). 

Anyways, I got to Honeybunches school and Mr N said Honeybunches participated all day!  While I was there it was the finals.  He got 2nd place in the Great Potato Race (Where they put a potato on a spoon and have to carry it across the field without dropping it and whomever gets to the other side 1st wins).  I am so proud of him for participating as well as he did.  The 2nd place was a major accomplishment for him to because it took great hand-eye coordination, gross motor, fine motor, planning and other skills.  He was fine, sitting near me, Daddy and Mr N.  Then he wandered to look at grass and played on the playground structure (Which is another accomplishment for him because he used to climb the structures at the other parks when he was younger, but not since he was about 3 y.o and this structure was complicated with lots of bars, etc).  While on the 2nd bigger structure with slides and all, he picked up some nasty juice box another child littered.  He began drinking it, then began looking like he was going to pour it on Mr N when he approached him.  He picked up a couple handfulls of the soft rubber chip things that are padding for under the structures.  One of them found it's way on Mr N's head.  That happened just as things were finishing up.  At this point it had been pouring rain hard for about 10 minutes.  The last activity, Honeybunches refused to participate in.  Mr N walked up on the structure because Honeybunches grabbed another handful of rubber chips.  He held his arms for a couple minutes, then walked him back down to the school because it was time to go back. 

Once inside Honeybunches walked himself into this empty room with just a table in it.  It seemed to me that he needed space.  He stayed there for a couple minutes, then we went to the computer room so he could show me his computer.  He began shutting down all the computers, found some paper and ripped it up.  He was really hyper.  Mr N walked him to the "Time out space" in his old classroom.  Sometimes he needs to go there to regulate and calm his body.  I figured that would be a good time to go wipe my glasses.  I was gone for a few minutes.  When I got back, Honeybunches was still struggling to regulate.  He did try to throw a chair so Mr N took it out of the space.  Honeybunches persisted trying to bring it back in. Then Honeybunches picked a book to read in there.  He ripped it up into pieces and I didn't see exactly what happened because the time out space has 4 walls, but Mr N restrained him for just a couple minutes.  Then Honeybunches began to cry.  That means the episode was over.  Mr N thinks he was "Stimming" and it was because of the rain.  I think he just got overstimulated because he had a busy day.  Mrs F said it was a long day, but also thinks that not being on schedule could have triggered him.  Overall, IMO he still did an awesome job lasting as long as he did, participating in the field day, getting 2nd place, and doing as well as he did.

I noticed he was doing lip puckering while at the school.  I talked to the pdoc this morning.  I was half asleep when she called lol, in the middle of a nap so it took my brain a few minutes to wake up.  I sounded so groggy she thought I was Honeybunches.  ROFL.  She agreed that Summer would be the best time to change things, if we need to.  She suggested getting another Lithium level.  She's going to call in an order to the lab and we'll get that done Saturday.  She said the next med she'd consider for him in place of Abilify would be Geodon.  She said it's easy on the body and liver.  She also mentioned Tegratol and Risperdal.  Risperdal is a definite "No" because he gained 65 lbs in the 2 years he was on that.  Tegratol I am not interested in trying because he had a negative reaction to Trileptal.  I will research Geodon, it's use with children, it's effectiveness with Autism, it's side effects and all that fun stuff so I can make an informed decision next Wednesday when we see the pdoc.  I hate changing things, but his TD seems to have gotten worse as before when we lowered the dose down the symptoms subsided but this time they are not.  Until we see her again, I raised his Cogentin back to 1 mg. 

DCF Visit

Today a car pulled up in the parking lot.  A man walked to the front door with a folder in his hand.  The dogs barked so I looked.  I seen my brother get my mother, then my mother let him in.  He was downstairs talking for about a half hour or so before my brother knocked on the stairs to get my attention telling me DCF was here.  (DCF is the Child Protective Services agency in my state).  Then I was asked to go downstairs to talk to him.  The man asked a bunch of questions about Honeybunches.  My mother has a licensed home daycare.  She's been watching this little girl H since she was just a few months.  Now she is about 7-8 years old. H's Mom called my Mom a little over a week ago to say that H told the school that Honeybunches supposedly put a plastic bag and blanket over her head, then smashed her head on the bureau so we'd probably be hearing from DCF.  1st off, we never let him play with plastic bags!  So he questioned my mother, my brother, and me.  He was asking me all types of questions.  "Has anyone ever told you he can not be around children"?  "No".  "What times does he take his medications"?  "In the morning, at noon and at bedtime".  "Does he take any in the afternoon, after school"?  "No".  "So he doesn't take any in the afternoon"?  "No". "Why does he have an aide at school"?  "Because he needs one to keep himself safe and to help him pay attention".  (Okay so with this one I told the truth, but not the whole truth lol... not really his business IMO and the less we tell to those people the better.) "So he had a med change a recently... why was that"?  "Over April vacation he was getting irritable so we raised his Abilify.  Then we had to lower it again because he had symptoms of Tardive Dyskinesia.  Do you know what that is?  It's caused by meds like Abilify.  It caused him to pucker his lips like this and stick his tongue in and out without knowing it.  We then increased his Lithium." 

My mother mentioned that he asked her if anyone ever said Honeybunches needs a 1:1 at daycare, has there been a report that he hurt anyone before, has anyone said he can't be with other children, have there been other reports involving him, and a ton more questions.  I was open with him about how Honeybunches has many diagnoses including Bipolar and Autism.  He asked could he talk to Honeybunches.  I told him he could try but IDK how much he'd get answers because of his Receptive-Expressive Language Disorder. He was here for a while, then left and came back to question Honeybunches soon after he got off the bus.  I told him that the DCF man was coming to talk to him because H said he hurt her.  He said he didn't.  Honeybunches did a great job talking with him.  He told him "H must be lying", how he might have only put a blanket over her head and that's all.  The man asked him the same question twice "What happened with H", with a few others in between such as what type of things do they do together, does he get mad at her, does she get mad at him, etc.  He was alone with him in the other room, but I was standing right at the doorway listening to make sure he was not coaxing him to say certain things.  He was kind of slick with questioning him the way he did.  Honeybunches stayed on track and answered well though. IDK if legally I had to let him question Honeybunches alone, but I felt like cooperating was the best thing to do. Oh and another thing... DCF man said H was supposedly too scared to tell anyone when this happened.  H tattled on Honeybunches about every little thing.  She told me many times how he was not sharing, not listening to her words, annoying her, interrupting her play with Princess, and every little thing he did.  I know that part is a lie.  She's not a scared child.  That makes no sense. Plus she was so scared that she always asked to come up here and play on the computer.  Yeah, okay DCF man!  I didn't get good vibes from this DCF man.  He seemed to be new on the job.  I've dealt with them enough in the past with allegations that got investigated then screened out, a couple that got opened, and with things regarding Shnooks to know these things.  This man didn't seem to know what he was doing.  He didn't ask the right questions.  For example why ask what time a child takes medications, but not ask what meds they are on?  How is that relevant?  Anyways, I am curious to see where this goes because he seems shady.  Also I wonder who filed this report.  The school counselor who knows Honeybunches and is part of the SPED PAC meetings that I will see next year and have dealt with many times?  The principal of H's school who is moving to Honeybunches' school next year? It was supposedly somebody from the school.  I just wonder who I should be cautious of and not trust?  Everyone maybe?  When things like this happen it's hard to put my guard down.  If it was down previously this makes it shoot back up again.  I will be looking at people next year wondering if they are the ones who called. 

My mother and I are both sure this incident that is being investigated never happened, at least the way they are stating it did.  The last day H was here, she was really mad at me.  H called her mother about 4x.  Finally I hung up the phone on her and told her to leave her mother alone because she was busy.  Then H said "Der ____ that is so stupid", ran in the other room and slammed the door.  The mother had the nerve to tell my mother that "Once this all blows over she can watch H again".  My mother is so frustrated, hurt, crying, angry and under so many feelings about all this.  She figures she's watched H all her life and wonders why her mother would wait until soon after my father's death to pull this.  H likes to hang around with Princess too.  Watch they will be calling in a few weeks like nothing happened asking can H come over or if Princess can sleep over there.  There is no way in H... E... double hockey sticks I am allowing that girl in my house or my children in hers.  She is trouble.  Her mother lets her walk to the store at 2 in the morning Princess told me one of the times she slept over.  She knows more about cat's balls (AKA private pieces) then children her age should be concerned about.  Yes, Honeybunches may have been aggressive with her in the past, but not recently and no where near how she described things.  The main thing is the bag.  He never plays with bags. The DCF man took my phone # along with my mother's, because I told him if he had more questions about Honeybunches I could answer them better.  DCF man asked who my mother's daycare licenser is.  I wonder what is going to come about from all this?  I guess we shall see if anything. The oddest part about this was it was like Honeybunches was the one the allegations were about and he was the one being investigated, not my mom or myself.  It was nothing about what we did, didn't do, should have did, could have did, or anything like that.  It was just what he supposedly did.  Everything, every question was about him.  Is that the job of DCF now-a-days too?  That was different.  Yup, another day in the life of a child with alphabet soup!!!

Awesome IEP Meeting!

We had Honeybunches' IEP meeting this morning.  When I arrived they was this Birds of Prey presentation, that the SPED director invited me to see.  Honeybunches' teacher was in there and could not really leave because 2 of her class aides were out today.  Honeybunches was sitting way in the back of the gym-cafe-torium against the wall with his aide.  I really enjoyed the show and was happy to be able to see it.  He walked up towards the front with me a few times to get a closer look at the birds when the man walked them around.  Then the bird landed a few feet away from where we were sitting, went on top of the basketball hoop and took a big poop lol.  Honeybunches thought that was hilarious as did most of the other children lol. He mentioned that "The bird should have took care of his business in privacy".  I had to tell him birds don't know about privacy lol.

Anyways, to his meeting which we began about 20 minutes late, but everything went perfectly.  Honeybunches will have tutoring the last week in June and the first 3 weeks in July with a male tutor Mr M who is teacher certified.  This tutor worked with him last Summer too and was a good fit.  Honeybunches is familiar with him, from when he used to be an aide in his old "Behavioral" class.  He won't have tutoring 1:1 though, it will be with one other student for the weeks in July.  The last week in June he'll be 1:1. Besides academics, the SPED director thought it would be a good idea to work on social skills again.  I agree.  Academically his teacher Mrs F said "He's made leaps and bounds"! He is reading just below 3rd grade level.  Next year she plans to work on comprehension instead of fluency.  In Math he's doing well with addition, subtraction, telling time and working with money (My boy loves $$$). He has a good relationship with the two other female class aides.  One of them has been switching off with Mr N some of the time.  He has begun to verbalize his feelings and trusts others besides Mr N and Mrs F.

They do have some concerns though.  His teacher said he's been talking to his pencil, which is something she's never seen him do before.  He is also doing tongue thrusting at school the past few days.  He has bouts of silliness that he can't seem to pull himself out of.  He doesn't seem to be in control of himself. He still refuses to talk about faces or emotions.  He's been having a very hard time with transitions.  When he's doing something he seems to get stuck and then can't let things go.  Next year there will be changes at his school, so I'm glad they are leaving his teacher and aide the same.  There will be a new principal and a new counselor, both of whom are female.  I said Honeybunches "Will probably test the counselor to begin with".  Everyone agreed he most likely will.  I told the SPED director that I had concerns about if he was to have a female aide in the Fall.  I mentioned the incident with his therapeutic mentor and how he got kicked out of that program.  I said "I'd fear for the safety of a female aide working with him if she had to take him alone somewhere".  That's when the SPED director asked Mrs F if Mr N would work with him next year.  He agreed he would.  :)

I got progress reports, which I am just looking over now from PT, OT and Speech (None of whom were at this meeting). 

Counseling Highlights:

• Engages in counseling services
• Tolerating full 30 minutes away from 1:1 aide and classroom
•  Has difficulty expressing his feelings to any significant degree
• Shows a lack of insight as to how his behaviors affect others
• Friendly and able to handle a much wider range of social settings then was previously tolerable
• Progressed nicely with identifying his feelings
• Continued to struggle with the comprehension of feelings, which in turn hindered successful peer interactions.)
•  Voiced needs/point of view and responded to counselor and classmate during small group sessions... continued to struggle in the larger group setting.)

Speech/Language Highlights:

• Shown improvements in all areas of communication
• Demonstrates increased perseverance to complete tasks
• Age appropriate articulation at the single word level
• Tends to mumble and his use of rapid rate impacts his intelligibility
• Recently completed formal assessment revealed expressive and receptive language to be below age level expectations
• Shown growth in his pragmatic language, improved his understanding of school rules and his ability to read social situations with adults and peers

PT Highlights:

• Made gains in all areas of sensory motor development
• Demonstrates decreased Kinesthetic awareness, has poor coordination and appears clumbsy (I don't like that choice of wording, but that's what is on the report lol)
• Tends to play same game over and over.  Has difficulty coming up with ideas for new games and activities
• Difficulty completing tasks with multiple steps
• Trunk flexor and extensor muscle weakness was appearant
• Difficulty imitating demonstrated actions 

OT Highlights:

• Made great strides in all domains, but especially in his ability to persevere with a difficult task requiring organizing, sequencing and timing of fine motor movements. 
• He met 2 of his 3 goals 100%

With the talking to the pencil issue, his continued signs of Tardive Dyskinesia, and Summer vacation coming I think we need to change his Abilify to another antipsychotic.  I called the pdoc and am waiting for a call back to see what meds she might consider in place of it so I can research them before our appointment next week.

More serious IEP preparations....

On a more serious note, after I get in a good mood from watching my favorite ladies from Shut Up About Your Perfect Kid at their IEP meeting, reading the humor of Dr. Seuss' IEP, and deciding where I think I am going to be on the meter scale, there are some other things I do to prepare....

1. I always bring a notebook and a few pens with me. 
2. I write down a list of questions and concerns I have.
3. I type up the agenda for the meeting.  (Yes, through the years I've learned to run them lol.)
4. I go over his current IEP and testing. 
5. To make that easier, I have three, 3-ring binders.  One has his current IEP, most recent testing, lab results, IEEs, Other things that state his diagnoses, and other up-to-date info.  Binder #2 has his old IEPs, old testing, old hospitalization records, etc.  Binder #3 is the state laws, regulations, info on hospitals, schools, out of district placements, etc if we ever need it.  Binder #1 always comes to every meeting with me.  I keep a hand out of the state regs in there too for quick reference. 
6. I bring my favorite IEP books with me: The Complete IEP Guide by Lawrence Seigel and Wright's Law. 
7. I review From Emotions to Advocacy  every few months (Which in fact is long overdo so I shall bring it camping with me, to begin reading it over the Summer again, but tonight I might scan through it). 
8. Go over lists of possible accommodations such as these: School Behavior tips for children with mood disorders; Tips for students with Asperger's; and  The "Education Corner" of the TBMF website.
9. Begin the meeting on a good note.  It gets everyone in a better mood and relieves some stress.  Think (Sometimes very hard) about something that somebody on the IEP team did right.  For example Mrs Understanding and his 1:1 are really good with Honeybunches' so I might make a comment about something I liked recently, or just say a general "Thank You" to everyone on the team for all they did all year for him. 

Tomorrow's meeting is going to be easy, but I thought I'd give some tips that might help others.  Some other websites with info about IEPs I've found helpful are:
http://www.specialed.us/pl-07/pl07-ieppro.html
http://www.ldonline.org
http://www.bridges4kids.org
http://www.familiesofkids.org/education.html#L006

State SPED Timelines can be found here...

Articles about increasing teacher awareness of Bipolar Disorder in children:
http://www.thebalancedmind.org/learn/library/an-educators-guide-to-pediatric-bipolar-disorder
http://www.thebalancedmind.org/sites/default/files/edbrochure.pdf
http://www.bpchildren.org/files/Download/Educator.pdf
http://www.studentsfirstproject.org/documents/Bipolardisorderfactsheet_000.pdf
http://www.nimh.nih.gov/health/publications/bipolar-disorder-in-children-and-teens-easy-to-read/index.shtml
http://www.nasponline.org/resources/principals/bipolar.pdf
http://www.familiesofkids.org/education.html
http://www.visualspatial.org/Kids/vslkids.htm

I didn't include much info about Autism Awareness in this post, because it seems that teachers understand that more than Bipolar now-a-days.  Plus Honeybunches' teacher has a son with Autism, so she "Get's it" or at least that part of his alphabet soup.  Teachers seem to know about ADHD (Which they are always questioning why I don't medicate with stimulants... UGH) and Sensory Processing Disorder.  It's the BP part of him that makes the teachers scratch their heads as they wonder what to do with him sometimes lol. 

Humorous preparations for IEP meetings....

 IEPs by Dr. Seuss
Author: Unknown

Do you like these IEPs?

I do not like these IEPs
I do not like them, Jeeze Louise
We test, we check
We plan, we meet
But nothing ever seems complete.

Would you, could you
Like the form?

I do not like the form I see
Not page 1, not 2, or 3
Another change
A brand new box
I think we all
Have lost our rocks.

Could you all meet here or there?

We could not all meet here or there.
We cannot all fit anywhere.
Not in a room
Not in the hall
There seems to be no space at all.

Would you, could you meet again?

I cannot meet again next week
No lunch, no prep
Please hear me speak.
No, not at dusk. No, not at dawn
at 5 pm I should be gone.

Could you hear while all speak out?
Would you write the words they spout?

I could not hear, I would not write
This does not need to be a fight.
Sign here, date there,
Mark this, check that
Beware the students ad-vo-cat(e).

You do not like them
So you say
Try again!
And you may.

If you will let me be,
I'll try again
You will see.

Say!

I almost like these IEPs
I think I'll write 6003.
And I will practice day and night
Until they say
"You've got it right!"

Honeybunches random wanderings...

Things with Honeybunches have been going better than I expected on the lowered Abilify.  His symptoms of Tardive Dyskinesia have subsided or at least are not as noticeable.  I have been trying really hard to get our family to eat dinner every night again.  That's something we did previously at least 5 nights a week.  A couple months ago Honeybunches decided he didn't want to wait until 5 pm to eat dinner anymore.  Interestingly it was around the time of the time change, but that doesn't really explain it because the time went forward not backwards.  IDK.  Anyways, every night he wants to eat dinner at 4 pm.  Trying to make him wait sends him into lots of fussing and sometimes aggression with the dog, because the dog can sense when Honeybunches is frustrated and begins barking.  The barking frustrates Honeybunches even more because it overstimulates him.  I tried negotiating and letting him eat at 4:30, but then his sister was not home so we didn't eat together again tonight.  I will come up with some type of resolution.  4 pm seems too early for everyone to eat dinner.  It's not like I make the boy starve lol.  He has a snack when he gets home from school at 3:10.  IDK if I should just make him fuss and deal with the meltdowns I know will come for a few days... or just let this be one battle I chose not to pick.  Hmmm? 

Honeybunches has been having mostly good days at school, according to what his communication book has been stating.  Today he had an interesting incident.  The book states "He had a great morning however he became upset after lunch, bolted from the room, ran to the 3rd grade wing, went into a random locker, took a bottle of water out of it and dumped it on the floor".  When he got home I asked him why he did that.  Of course he answered with his favorite common phrase "I don't know".  Then I asked him if he was scared of something, upset, scared, or frustrated.  "I don't know" he again answered.  I guess that's part of his Expressive-Receptive Language Disorder or Autism.  I asked him to point to the picture on his feelings chart that was how he felt.  He refused.  I will probably never know why he ran out.  I wonder what made him upset? It gets hard sometimes not knowing what goes on in his little brain. 

Only 7 1/2 more days of school this year.  This Wednesday I have Honeybunches' IEP meeting to go over his Summer Planning and next years placement.  Next Thursday is the last day of school and the day we go on our 1st camping trip of the year.  Oh how I love camping!  There is something about the woods that calms Honeybunches and is so relaxing to me.  He can spend hours out in the wilderness searching for lizards, frogs, knewts, butterflys, turtles and whatever other creatures we find.  I love this campground.  We got reservations at our favorite campsite too!  There is a loop across from us where he can ride his scooter, plenty of room to run around, and a nature trail with lots of woods right across from us too.  An added bonus is it's very close to the bathrooms which makes it less frightening at night for DH lol.  My man from the Bronx in a small very woodsy campground is interesting.  He always does something that makes me laugh! Camping is our cheap vacation as it's only $12 per night to go to state campgrounds.  The food we make doesn't cost any more than regular grocery shopping would.  Of course we bring Honeybunches' favorite cuisine: Oriental Flavor Ramen Noodles, Apples and Peanut Butter and Lite Life Smart Dogs. 

DH has been doing better these days... for now anyways, knock on wood.