Pray, Pray HARD!

I'm having a tough time with Harley lately. I hate to admit it...I know I can handle him...I just have to be more resilient and strong. It's just some days I question my abilities...and I think he knows that...

I need to backtrack a little...we went to the neighborhood park a little over a week ago...it was not the park Harley was expecting we were going to go to and had a major meltdown. I think I could've talked him down, but Andrew took the initiative and did a restraint on him...truthfully it was probably the right thing to do to keep other children and families at the park safe as Harley was throwing punches, water bottles and anything else he could get his hands on....

Well we got a visit from social services as a result...so when today's incident happened Andrew was laying down (this incident happened in our home with the OT here...he has a new OT and she had asked him to do a non-preferred activity)....He heard it all happening but is now afraid to get involved in helping with this type of behavior....

I tried the break card as suggested by Creative Staff...I held up my 5 fingers. He sat back down after clawing the air and I took a finger away...telling him he was doing a great job listening...

THAT is when it got out of hand...he began screaming about how he needed more than 4 minutes and wanted a 20 minute break....This was a total work avoidance technique on his part...a manipulation...so I refused to allow him to go to his room for 20 minutes and suggested he sit on the couch instead...I tried a compromise and said how about 5 minutes? He said 20! Then he suggested 10 so I went with 7...He exploded further and ran into his room...I 'talked' him out of his room but in the process he punched me in the chest, knocking the wind out of me (and scaring the crap out of the OT)...throwing stuff at me...scratching and biting me....The scratches broke the skin but thankfully the bite did not....

However, I did manage to get him out of his room and to the couch. Once on the couch I set an audible timer for 4 minutes (as originally 'planned'). He sat steaming while the OT and I looked out the window and talked about the dogs walking down the street, the baby in the stroller and how Harley is a "dog expert"...he came right around and entered the conversation like nothing ever happened...

This all started because she wanted him to do some handwriting...I asked if I could slightly modify it...which I did...and he ended up doing handwriting, but it was via 'shopping' in the Oriental Trading Magazine he got in the mail yesterday. He discussed the items with her, followed her directions on what he had to write down on his list (including page numbers) and then explained why he picked these items...

So all in all, he did do what was requested of him...I just wish I could've handled it better and without bloodshed....Maybe next time?

But please pray...it's days like this I wonder if I am making the right decisions in his care and losing my confidence in how to handle these items. I guess it's just one more thing to talk to Mike about? Or Gabe? or Travis? I'm not sure...there's gotta be someone I can talk to about it right?

What a week!

This has been a crazy week...Monday Harley's school called and said he was sick and needed to come home. He had been coughing...Allergy season has hit HARD in Colorado with this strange weather we've been having AND he's asthmatic...BUT they didn't have his inhaler at school since he's not needed it the past two years at school...

Back up...

Zachary's been sick on and off for nearly 2 (maybe 3?) weeks. He's finally improving...first it was his ears bothering him...then he developed a runny nose...then his allergies acted up and his eyes gooped up with that lovely green stuff...then a cough...and the cough is sticking since we are now passing it from one family member to another and back...

So...I figured Harley could be sick with what Zac's had so I picked him up...that was Monday at 9AM...and he's been home ever since..not even any therapy. It's been a tough week since he and Tyler don't get along AT ALL! They are constantly picking on each other, touching each other -- this is worse than the usual sibling stuff. Harley doesn't understand his strength and size in relation to Tyler. When he sits on Tyler...it's dangerous. It's been so hard...I've barely gotten anything done this week because I have to follow them around (and they follow each other just to beat up on each other) and make sure they are not injuring each other in some way, shape or form.

We are considering a heavier sedative for Harley because he is getting uncontrollable. He is making so many threats he is going to Kill is and someday we are afraid he will follow through on those threats. He has no idea what remorse is and could actually hurt us without regret or understanding. It is so hard to decide on these kinds of things...I don't want to turn him into a zombie, but I don't want to send him away either...what other choices do I have?!

Today we went and got the results of his MRI from the beginning of April. His brain looks fine...no "holes" from the lead poisioning (which would explain the anger outbursts out of nowhere) ... the cyst on his brain hasn't grown or moved so that's not the reason for it either...it's just his maturing...I never expected it to be this hard...I thought we were doing well and then the damned hormones kicked in...I was warned this kind of thing could happen, but I always figured "to someone else"...."it would never happen to me"

Tyler is having a rough time right now and I have to close this entry, but I have so much to add....I don't want to sound like a bad parent, but I am a parent at a crossroads, unsure of what my next step -- or the best step to take-- is.

REWIND: March 1, 2010

For you Gabe :D

March 1, 2010 was a day for CSAP at school...Harley doesn't take the regular CSAP, so he didn't HAVE to be to school til 11:30...We went ahead and let him sleep in and then took him to school at 11 --
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(copied from Facebook)

What a day!! Took harley to school...major meltdown..tried breaking the windows out in the van b/c he didn't want to go to school afterall...got him out of the van and he took me down...thankfully i only have 3 pcs of broken skin...and many more bumps and bruises

The school brought out the aide, asst principal, safety ofcr, and psychologist...no one could calm him down...I called Gabe from Creative and he offered to come and help...I told him I'd wait and see what I could get him to do...things continued to get worse til I felt like I was gonna burst into tears and called him and got Gabe to come to the school -- (you are my hero for bailing me outt!)...harley calmed down and when Gabe told him he still had to go to school before creative, he ran...for I'm guessing about a mile!!! (if you know the area, he walked (well, waddled, b/c that's his gait)...down the Old Kipling hill and down Morrison Road...I don't think I could've done the hill...Thankfully Gabe (young and in shape) was there to follow him...)...When he got to a certain point, Harley turned to Gabe and said I'm tired...and couldn't walk back...

Finally got him back to school with 30 mins to go...more screaming and tears..

Then his aide had to leave and they didnt have a sub so i had to stay with him for the last half hour of school...gor out just in time to rush home..realize i didnt have my house key...nor the spare...tricia to the rescue to bring my spare key...rush to get rob and off to his hearing...ready to go home and rest....but thats not on the schedule!!
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OK, so here's a pic of my "major" bite/scratches...so why, if they look so minor do they hurt so damned much? Should I worry that his bite broke the skin and he was bleeding at the time? Maybe that's why it hurts? Should I have it looked at or just watch it?


(leave it to me to make a mountain out of a molehill right?)...it's fine...all healed...

Follow up Behavior Support Plan meeting

I’ll take them in order of the list I wrote a couple of days ago…

Harley’s behavior support plan follow up meeting:
This happened last Thursday…right on the deadline date we set during the meeting on the 1st. Unfortunately the area special education director was not able to make it. The ARC advocate also said she couldn’t make it. We couldn’t find child care for the two littles and I felt like I was going into it blind…to top it all off I had the worst migraine I’ve ever had and had just gotten a call that my surgery was scheduled for a very bad time (more on that later).

Well I ended up taking Andrew with me, which means that we took the two littles with us as well. When I arrived at the main office imagine my relief when I saw the ARC advocate had shown up after all…she had rearranged her schedule and had her 10 year old son walk home from school just so she could attend this meeting. I also had a representative from Creative there. (they finally were able to complete their observation day on Wednesday, the day before the meeting).

We have had such issues with the school psychologist…she keeps bringing medications up as the “big issue” – which is illegal…the school cannot force us to medicate or change our child’s medications. She has been warned three times and it’s to the point that the superintendent of our school district is now involved in Harley’s case.

Because I had the advocate and Gabe from CP there and the littles were being pretty loud, I had Andrew take them to the recreation center next door to the school.

The meeting went on and on for half an hour and we had gotten no where. At this point I could barely keep my eyes open due to the level of the migraine I had. Finally the ARC advocate raised her voice and said if the medications are brought up one more time we will disband this meeting and recall it when Dr. Lutz can be here (the superintendent)…just at that point the principal of the school FINALLY joined the meeting and the advocate pointed out to her that she was so frustrated with all these violations she was about to call the meeting over until such time she could get someone in that the school psychologist would listen to.

They had the plan written in such a way that it was not clear what his behaviors were nor was it clear how to best handle it. They were asked about the antecedents to the behavior and not one person in that room could pinpoint or outline what could be causing his behavioral outbursts. The only thing we could come up with as a group is that if something is not his idea or he has the perception it is too hard for him, he will begin to escalate.

Once again, even after all these warnings the school psychologist brought the medications into the discussion as we were discussing Harley’s inability to “stay awake” in the mornings. Even the ARC Advocate lost it at this point and threw her pen down.

The meeting went on without further mention of the medications and we discussed the meat of the meeting. They had a “plan” that they would discontinue the “token” system…but had no plan as to when. When I asked when they thought they would stop it at the school’s level they mentioned middle of next month…That will not work…Again, they had to be reminded that he is having some major routine changes and to expect an increase in behaviors and taking away the token system when he is that stressed will just increase the opportunities for him to have behavioral issues. Then we have 2 weeks of school before Winter break…things will calm down and just as he’s getting back on track we will have Spring break. We were able to get them to agree that the token system will NOT be discontinued until we can again meet.

When we got to the portion of the priorities of how to deal with Harley if / when he becomes physically aggressive the meeting took off again…their plan was to remove him to a quiet room or sensory room and if he continued to escalate, they would call law enforcement in. I asked that prior to law enforcement being called they should call me and I would come and intervene if at all possible prior to law enforcement getting involved. The principal expressed a concern that if behaviors arise while I am on driving restriction from my surgery that would not work…so Gabe from CP spoke up and asked that if I am not available, they are to call CP and have a staff member from there come and intervene prior to law enforcement being called.

All in all the meeting which should have taken less than 1 hour ended up lasting nearly 3 hours. We will be receiving a copy of the behavior plan with the changes within a week (supposedly!) and will have another meeting to have it corrected should it need to be corrected. Tentatively we are planning to meet in late January to discuss the token system and to review what other strategies can be used or to update it based on the decrease in behaviors or newly displayed behaviors.

I can tell this is going to be one Loooooong school year – at least they should have it down for next year and write a VALID plan for his transition to high school in a year and a half.

Wow, I went on and on and I think I touched on everything that was of importance from that meeting. I am not sure how much more I will write tonight…but will slowly try to get updates done on the rest of the list I made in the previous post.

Thanks for reading if you made it this far…. Ask away any questions for clarification. I use this blog as my ‘tracker’ so to speak when I need to refer back for notes for other meetings…So If you feel I left something that could be a crucial part out, please let me know by leaving me a comment.

Aww, they grow so fast!!

Zac loves Kelly's MP3 Player


And he loves his LeapPad too (we call it "Zac's computer!")...Look at that tripod grasp on the pen!! He's got it down!


And...Robert..he's growing up faster and faster...he went on his first 3 day "field trip"...here he is...trying on Andrew's suit!! I talked to him today and he told me how when he "revealed" himself in a suit two of the girls came up and hugged him and told him how handsome he is...then invited him to lunch at a Chinese restaurant. I can't wait til he gets home tomorrow and tells me more about his trip.


I have so many things I should catch up on and don't even know where to start. It's late, but I'll try to do a few lines...I hope they make sense....

Over the weekend we worked more on Kelly's room. We are closer to getting it insulated...we got her a Murphy bed..but it's about 4" too long to fold so we're gonna have to make a couple of changes. I am so lucky to have a handy hubby!

Her old bed (frame) was moved into Harley's room...he LOVED it when he got home announcing "it's PERFECT!" He now has a bookcase at his headboard for keeping his "Craftsman catalog"...(he collects catalogs and really, really LOVES the Sears Tool catalog! LOL)

We had to replace our sump pump..found out it wasn't working and then figured out why...because it had gotten overheated and it blew all the seals out on it.

Tonight I discovered that our sewer line has a slow leak, but only when we run the dishwasher...I gotta break the news to Andrew about that tomorrow when I see him.

Thursday we meet with Harley's school to finalize his behavior service plan..FINALLY! Tomorrow he is competing in a Special Olympics Soccer tournament and next week he's be participating in bowling (he's an amazing bowler!).

Friday I go in to the eye dr to get my visual field test so we can have a baseline and see if my vision improves, worsens or stays the same after surgery.

Then Saturday is Kelly's big day...A day she's been planning for about a month now..she is going to Six Flags for the day and then staying after dark to go through the Haunted House (I don't remember what the name of it is this year)..she and 9 of her closest friends..and she's managed to get free tickets for five of them (and herself!)

Tyler got his first perfect attendance award from school!! It has Curious George on it and he's treasuring it! It's so cool to see him so excited...now if only I could get him excited about getting up at 6:45 AM to get ready and go to school by 7:15...well then we'd be all set!

Oh this past weekend my ex was supposed to come to town to "spend time" with the kids. The weather was awful and they ended up closing some of the highways between Wyoming and Colorado..so he rescheduled for the weekend after next. Funny though...Robert came home sick from school on Friday..but when he got the call from his dad that he wouldn't be making it this weekend suddenly he felt fine and ate me out of house and home! :))...I told him I thought maybe it was stress and he needs to find some self calming techniques...

SO that's all I'm gonna write for tonight..My eyes hurt and I need to get some sleep before our long day again tomorrow!

Meeting update

The meeting yesterday went Amazing!!

On Tuesday of next week Harley will begin attending school full time once again. We are in process of formulating a behavior plan for him and are to have another meeting by October 15th. We have figured out who will be his primary provider when his para is not in school (which will be the para from the Challenge Program, which is familiar with Harley and his needs and his behavior plan). He eats lunch with only 6 other students, a para and a special ed teacher. Creative Perspectives is going in next week to observe and make suggestions on how to handle Harley and his behaviors when they start to see a meltdown.

All in all, it went really well...Transportation (curb to curb) has already been figured out and arranged to start at 6:48 am on Tuesday (gulp!!)

Harley's pretty excited that he gets to have science class again...they will be learning about bones!! It's only the first two periods of the day that they are having to add back in...so he will have reading first and then science and then will continue with his day as he has been as not to cause any more disruption in his routine.

No school for Harley today...

because he had an appointment with his psychiatrist. If you recall two weeks ago his school psychologist DEMANDED that I take him in to Childrens' Hospital for an emergency medication evaluation...which I refused...which lead to Harley getting his school days reduced from 7 hours a day to 3 hrs and 45 minutes a day. I tried to get thet behavior team who has worked with Harley (and the family) for over 4 years now and the school refused. They wanted the medication evaluated as they were SURE that it was an issue of him not being on medications of a high enough dosage.

Well, today's meeting with the psychiatrist went well...I told him that since the school was over reacting the first week of school to the hallucinations, Harley saw that as an easy out and would purposely carry them on longer than they really were. Basically he was manipulating them. (I had also told the school this). I pointed out to the school that he is not only psychotic but also autistic and they were just messing with his routine...which I in turn told the psychiatrist today and he agreed that the school has over reacted and handled this all wrong.

I signed a release at both ends for the psychiatrist to talk to the school psychologist...and he intends to tell her to allow the behavior team to come in. I explained that we have a system that works but the school was not cooperating and were falling into his "evil" plans (as Harley calls them) by letting him avoid work due to his outbursts. If they still will not allow the behavior team that has worked with Harley for 4 years come in and give them some training (at no cost to them by the way), we will call the School District's Behavior team in...who will consult with the behavior team who has been working with Harley for so long.

So playing the game they want to play...but still getting the outcome...just taking a little longer than it SHOULD have...simply because the school officials would not listen to the parents and staff who know Harley so well.

Outcome

I am NOT happy with the outcome of the meeting yesterday. The decision is / was based on Harley being a danger to self, other students and staff--otherwise they wouoldn't get away with doing this....

Harley will now attend school from 10:45 to 2:00 (regular day is from 7:10 to 2:00, so he will miss the first 3.5 hours of school). He will start with his math class, which is being changed to a math lab class where there are only 7 students (vs. 31). This I agree with. Then he will go to lunch. His aide is NOT with him during lunch...we discussed that other students can be mean and say things to them and they vehemently denied that to be the case because "their students aren't like that" and because "there is always an adult monitor in the lunchroom, although not assigned to Harley personally". Then he will attend the 5th period class in the Challenge Program working on life skills (rather than his cooking class) where there are only 3 or 4 other students with special needs. He will end his day with his Language Arts lab class which also has 7 students (this is not a change in his schedule).

I told them that when we were discussing his placement last year that I didn't feel this school was the right setting as I didn't feel it could meet his needs. I was told at that time that they were doing a pilot Challenge program for ASD students this year at that school and that is why they placed him here anyways. They asked who I worked with and I gave them the names of the two special ed directors I worked with last year...I got the standard response of "oh we weren't aware because they are no longer with the district"...

They again refused to allow Harley's behavior therapist to come in and train them in what works for them with Harley. The psychologist at the school feels most of these issues revolve around his hallucinations and he needs a medication evaluation. Since I refused to take him to the ER -- the earliest appointment we could get was the 14th, they have decided until his meds are straightened out and we see a reduction in hallucinations this will remain his schedule, then as he shows improvement, they will add hour by hour to his day. Hopefully by the end of the school year they will have him going full days...that is the goal...

I explained that I and the behaviorist felt that although he's most likely having hallucinations he is exaggerating them because he knows how much it upsets the administration -- and then he gets his way. They said I could not make that call, neither could the behaviorist because we are not doctors...

Now yesterday I kept him home because it was the first day with the anti psychotics doubled. It turned him into a glassy eyed zombie for a good part of the morning...but still around 11:30 he began having hallucinations. I guess that's another reason this schedule makes no sense to me...Since the school reports they see the hallucinations, behaviors and violence around 11:30, they are having him start at 10:45?

They will be bussing him to school but not until Tuesday of next week. Today I will drive him to school and he will try out his new schedule. Friday we have Tyler's preschool parent orientation and my endo appointment so he won't be attending school tomorrow...which puts a real wrench in Andrew being able to attend my endo appointment with me...So today I am on the phone trying to figure out if I can find someone who is willing to sit with Harley, Tyler and Zachary...it's only for 3 hours or so...

He's at it again!

Remember that line from the Toy Story movie?

Well, yesterday I got a call from Harley's school...they are so totally over reacting! He was having more hallucinations to the point that he couldn't function. From what I'm told he was making threats to kill people...had to remove him from the classroom...and then they called me and said I needed to come and pick him up right away...that was not possible at that very moment as I was waiting for an in home visit with Tyler's preschool teacher and Andrew had the van with the carseats anyhow. The school psychologist said they are "highly recommending an emergency psych / med eval for him TODAY at Childrens' Hospital Emergency room". Three things I had a problem with with this...#1-they said it in front of Harley and #2-If I were to take him to the ER they would put him on a 72 hr psych hold -- which would just make his conditions worse and #3 it would mess up his routine and that would cause more of the autistic tendencies to come out. It is my right as his parent to refuse to take him to the ER. I did however contact his psychiatrist who was able to make a med change over the phone based on the fact that this is the third time he's been sent home from school for hallucinations. His psychiatrist agreed with me that the ER was not the best place to take him and felt the school was overreacting...this is Harley! It's not his fault, Harley's fault, the fault of the parents nor the fault of the meds that are unmanageable...it's the fault of the last school misrepresenting Harley when they transferred him to this school.

Of course I called Harley's behavior therapist too...for a few reasons there too...I had to tell them NOT to pick him up from school and tell them about the behaviors the school is complaining about. They offered to go in and provide training...they feel that although Harley probably is having mild hallucinations (which is what they see) but then he knows it upsets the school so he plays on it and exaggerates it so that he can use it as an avoidance technique for non preferred activities. I agree with them somewhat on that point, however this happened when Harley was at lunch..and we all know that eating is NOT a non-preferred activity.

However once I got him to behavior therapy he started calling people "perverts"...He doesn't know what it means and doesn't use it in the appropriate context...I asked where he learned that word and he tells me that it was what Isaac said...I BET this is what set him off yesterday.

Andrew picked him up from school yesterday when this all happened so I could greet and meet with the ladies from preschool...They were discussing making Harley attend school only half days since these behaviors tend to start between 11:30 and 12:30. So the school is simply trying to avoid is how I see that...The school psychologist said they would have a meeting that afternoon regarding "what they would do with Harley". We were not invited nor could we get his behavior therapist into the meeting (they said that they didn't want him there!?)...does this seem strange?

Since we are doubling his dose of his anti-psychotic I decided I would keep him home today for observation to see if it makes him sleepy and/or reduces the hallucinations we see at home.

BUT then the school called and asked that we keep him home today. Then asked if we could have an emergency meeting at 12:30 today. I told them I could not find childcare on such short notice. They have called in the special ed director for our catchment area, the psychologist and the principal as well as myself for this meeting. They are doing it by conference call at 12:30 today and I will be attending by phone.

I wonder just what their suggestion is going to be? Moving him to a different school? Making him attend only half days?

I have to take Harley to music therapy today...a non preferred activity so I better charge up my camera and see if I can get some video LOL

Better day!!

I only got 3 calls from school today...and none of them had anything to do with Harley having an actual behavior!! It was more to check up and see if the medication changes went through (which they will not until Monday) and to check to see if he was riding the bus or if I was picking him up!

So YEAY!! the 6th day of school and he didn't have any outbursts or sleep at all...That is such great news! Hopefully as he gets used to the new routine, new environment and new expectations it will continue to go smooth...

So three cheers for Harley...Harley! Harley!!

Harley's really really on a roll!

I was out trying to get Robert's cell phone activated...we've been promising him for a week that we would get him his first month of service and then I would be up to him to try to get the money from his dad or to pay for it with the stipend he gets from the Workforce center.

As I was getting out of the van at the cell phone store I decided, "oh I better take my cell phone with me...just in case someone calls with important information" (thinking my doctor may call with test results today)...

As I pick up the phone it starts to ring...It's Harley's school...the principal to be exact....she tells me that Harley became verbally abusive and physically violent and then ran away from the school. He ran across the street, nearly being hit by a car since he's got no street/community safety skills.

They were having a meeting at the school at the time and were able to gather a group of teachers that could follow Harley, try to catch him and bring him back to the school. One of the assistant principals got close to him and nearly caught him and started back to the school and Harley turned on him and kicked him. When the man bent down, Harley spit in his face...then ran again...so they were planning on calling the police to try to catch him because it was getting out of control. They begged me to help them out and I told them I could be there in about 10 minutes.

I arrived and Harley was sitting in a chair in the office. I turned to him and he swung at me..I backed him up right back into the chair. I had an open can of pop to offer to him thinking it would at least keep his mouth busy (I had already drank about a third of it). I passed the pop can to him and the grabbed it out of my hand with such force that the pop 'sloshed' out of the can and onto the main office carpet (it wasn't a lot but still). He began screaming at me that I was a 'moron' and that he would "Kill everyone!". I had him turn into the corner and took the pop from him since he was so mean. He was left in the waiting area of the main office with his aide and I was taken to the principal's office with the principal, the assisstant principal and the school psychiatrist. We discussed ways to de-escalte him, how to help him overcome his behaviors and how to prevent these kinds of things from happening...unfortunately, they no nothing could have prevented today's behavior as there really wasn't any antecedent...all he did was go into his math class and saw that they were working on the multiplication tables.

Since it was so close to the end of the day he came home with me, besides they felt it was dangerous to keep him at the school or even to put him on the bus. I will send him to school tomorrow morning while trying to contact his psychiatrist to discuss meds and get things straight. It's looking like we are going to have to slightly sedate him on a regular, routine basis to keep him even enough to function.

Tomorrow I will call his psychiatrist (he's at the north office on Fridays, but off on Thursdays) and try to get his lorezapam changed from a PRN to a regular daily dose while at school.

As not to leave you hanging...

We went to redbox tonight :)) ... I got there to pick Harley up and he was actually inside the center. Matt tells me that to get him out of the school with as little resistance as possible he got him to go outside on the front lawn and just watch clouds while laying on the grass in front of the school for about 15 minutes before he even attempted to get him into his car. He said the same thing happened when they arrived at the center but Harley had managed to get into the center about 15 minutes before I picked him up...so he earned his redbox movie. He selected Bolt (I've not seen it, is it any good?)

I am once again not giving him a trazadone tonight but it seems he physically exhausted himself with this outbursts today and he's actually asleep as I type this...is it a miracle? I think so...it's so unusual that he is not up and hallucinating his ass off and pacing through the house at this time. I can't even remember the last time he was actually asleep by 10:00! (of course he's a master at trickery and he might just be awake and faking sleep when he can hear me coming!?)

The other thing I found today is that they feel an increase in his hours is necessary for behavior therapy. He will go from 2 to 3 hours 3 days a week. There's a number of reasons they gave me for this:
#1) because two hours just isn't enough time right now with the major transition he is experiencing and
#2) because he gets out of school at 2:00 and doesn't get much opportunity to socialize with other children since most of them aren't even arriving at the center until 3:30 or 4:00;
#3) because they can formulate a better plan for the further transition and socially appropriate behaviors if they had more time.

I have to admit I was very reluctant to accept the increased hour a day...and here are my reasons:
#1) it was nice to have dinner by 5:30 each night rather than 7:30 or 8:00...
#2) it was nice to drive during non-rush hour (or the very early part of rush hour!)...
#3) it allowed me to give him his meds at 4:00 and now I will have to have them give him his 4:00 meds (and I do not like others giving him meds).--those are all selfish reasons so I know that it is in his best interests to have the increased hour per day.

They couldn't add it to his plan until I approved...now that adds another $40 per DAY to his plan...which may not be in the guidelines of the new budget cuts...but his caseworker explained that since we are also using it as a respite resource that she feels it will have no problem going through irregardless because of our "high needs" due to not having any support from family or friends locally.

So this will most likely start as of October 1st...at least I have time to adjust to it before it happens right?

Oh man! Harley's on a roll!

Upon returning from Tyler's preschool interview, which went FANTASTIC I get a call from the school psychologist...

Harley's having major visual hallucinations which is leading to violent behaviors and are bad enough that he cannot function in class. She was asking about his meds...Somehow Harley's aide misunderstood that maybe I had run out of one of his meds...that was not the case...we had discussed the fact that Harley was sleeping through the first period of school each day so I cut out his trazadone dose last night. Well Harley had a terrific morning and was actually able to stay awake and participate in class today. She agreed that dropping off the trazadone would not create more hallucinations. We reviewed the medications he was on and she was asking if there was another anti-psychotic medication we could put him on as his hallucinations make it difficult to even speak with him. (Finally, someone else who is seeing them and willing to SAY they are seeing them!)...I explained we have been through many of them already but that the side effects of the other, more effective ones create other issues, such as constant hunger and then we have issues with anger and violence over refusing him food.--He broke our refrigerator twice over that. And the other caused weight gain. And the 3rd other one we tried didn't seem to have much of an effect...

Then she calls back 10 minutes later asking for suggestions. I had to explain both times that today at behavior therapy is music therapy...although Harley is not required to participate in music therapy...he still considers Wednesday a non-preferred activity day...so he will do anything and everything he can do to avoid going with Creative staff.

A few minutes later, she calls back again and I have her write out a contract with him that he has to go with Matt today to earn his Redbox movie.

then at 2:35 Matt calls, it took him 35 minutes to get Harley from the school office to his vehicle. He puts Harley on the phone and he starts to yell at me that I need to pick him up at school because he cannot go to CP...he does NOT want to do music therapy. He has choices on Wednesdays...instead of music therapy he can sort the recycling, he can clean the windows and mirrors or he can help to organize the early intervention rooms for the "little kids"...I reminded Harley that if he cannot get into the center today and I have to pick him up somewhere else he will lose his contract to get a redbox movie today. he says "FINE THEN!" and throws Matt's cell phone out the car window (thankfully they weren't driving yet or I'd be paying for a new phone!!).

So...we will see, we leave here in 30 minutes to get Harley from CP...and then a quick stop at redbox on the way home...

BackTrack to Wednesday - Part 2

If you've been reading for a while, you will remember that I had to do a 24 hr log on Harley about a month ago. Wednesday was the inperson meeting to review the document, answer a few questions and have the caseworker phyiscally see Harley.

Well, the previous post I mentioned my mother in law came by--she can never resist bringing junk food..this time it was pop and chocolate donuts. Of course this set Harley to whining as soon as she set it all out on the table...so I let him have a pop and one donut. He was NOT happy that I would only allow him one donut. When he asked me for the 16,549,877,946 time in five minutes and I said no again he threw an empty pop can at me - hitting me in the eye. I don't typically post pictures, no less close ups of myself but this stupid EMPTY pop can cut the edge of my eye and gave me a slight black eye...

The way he was screaming when he threw the can at me you'd think I was beating him! Well, just so happens the caseworker was walking up to the door at the time of the whole incident and she heard what was going on from the street.
Because Harley had hit me like that he was going even more beserk...he kept insisting on going outside and "running away" and I had to keep retrieving him and bringing him back into the house. Finally I got him to go into the backyard rather than trying to take off out the front -- then I heard him open the side gate to leave again...so again he had to be retrieved. She'd been here about 30 minutes before I was actually able to sit down and start the paperwork part of the meeting. I finally managed to get Harley into his room...a few minutes later he comes out with a picture he drew of him slicing "mom" up with a knife. Then he told his hallucinations to "seize her!" and started to talk to them as if they were there. Then he took actions to punch me, but was able to stop himself before he actually made contact..and acted as though he was slicing my throat...then went on and on about how he and Zachary would be leaving and will just destroy the rest of us and they will be happy forever together. It's scary to me, I can only imagine what his caseworker thought, especially considering that this was the first time she had met our family.

We finally get through the 24 hr log and we start discussing services. This is his annual plan writing ceremony...where we decide what services are most apprpropriate and gather evidence. You need to have at least one witness that these types of things happen that is not a relative...and she whole-heartedly and honestly was able to sign as a witness. She was shocked when she learned that this whole 'episode' was over a chocolate donut. I explained that he had had a change in routine this week with no camp and getting ready to start school. The fact that the change in routine created more violence in him was enough evidence to certify that his behavior therapy services should continue. The trashing of the house certified the continued use of housecleaning services. But then it came to discussing respite services...I have yet to find a provider that I trust AND is willing to work with Harley. She reviewed the supports we have which are very limited...we have no family members who are wiling to take Harley or even any of the other kids. So when I suggested that we cut the 17 weeks of respite out of our plan she began to cry...I have NEVER seen a caseworker tear up like this...She absolutely refused to take the respite out of our plan...With the budget cuts though I'd rather not have respite and use the times he's at behavior therapy to do the things we need to do like shopping in the grocery store or the other kids' doctors' appointments...that is one service I would like to see NOT cut ... so if we need to put our plan expenditures back, respite would be the first to go. Second would be the housecleaning service, but cutting respite is at the top of our list since we haven't been able to find a quality provider.

We discussed adding Harley to the waiting list for adult services when he turns 14. That is so close. I am not ready to think about his adult placement yet but I know it's something I need to think about.

All in all I think the meeting went well. She left saying she was completely overwhelmed with everything she had witnessed and discussed so we may need to meet again when Harley is not home to be able to concentrate more. Thankfully I already had all my letters of medical necessity on file and she was able to be a witness so that cut one less piece of paper out of my filing system.

Now I wait for another 2 weeks or so -- unless she decides we must have a follow up meeting -- to learn if our plan is approved as written. It seems as he ages the monetary portions rise...when he was 5 and we wrote our first plan, his budget was only $9,000....With the services we are requesting this year -- which is simply the behavior therapy, summer camp, spring break camp and housecleaning and respite it totals nearly $25,000. They've put a total cap of $32,000 per family per year as part of the new budget cuts...I wonder if he will still even quality since they are making adjustments to the IQ ratings?

Really? He doesn't need a behavior plan?

Still arguing with the school...ok, maybe arguing is the wrong word...convincing the school Harley should have an OFFICIAL behavior plan attached to his IEP...They are just trying to make themselves look good because all the testing they've done has showed Harley has improved by .2 grade level since arriving at their school two years ago...

Well, they still "disagree" that he should have an official behavior plan...and if they continue with that, I will just take it up with his new school and have them incorporate it....

Here's the "behavior report" that came home yesterday in his back and forth book:

"Harley had a good morning with marth and art. At 12:30 he was asked to work on multiple skills. He threw the books and pencil, pounded his fists on the desk and cussed at his class and Mrs. LaFollette. He refused to leave the classroom. Mr. Cook (asst. principal), Mrs. Duncan (psychologist) and Ms. Thomas (spec ed teacher) came to the classroom and still he would not leave and became aggressive. Since he would not cooperate, we had to have the class leave the room. Harley stayed in the classroom and ate lunch with Mrs. Duncan. He calmed down at about 1:30. He also spent a lot of time in the bathroom today between 9am-11am he went 8 times."

Ok, so they had FIVE adults in the room (the three they called in, the aide and the regular classroom teacher) and they could not get him out of the room or get him to deescalate? They finally had to remove the rest of the class from the room? He's cussing at everyone? Becoming aggressive? These types of behaviors do NOT warrant a formal behavior plan?
GRH!!

Half day for Harley today...Still painting...Fell off the quit smoking wagon yesterday, but back on it again today! Hope today is a better day....

30 seconds

Of what we deal with so far as Harley and his 'attitude' about 45 minutes out of every hour!! It gets even worse when Tyler's in the room for some reason...they just don't get along...Harley thinks it's ok to parent Tyler and they just don't agree most of the time.

This 'episode' was because we wanted him to go outside with us and play.

What a Day!

Yesterday was quite a "fun" day...Just add another "Worst mom of the year" award to my wall!

I wanted to get a shower in first thing in the morning, but I can't run water in the bathtub when the boys are asleep...they get so excited thinking they're getting a bath that they wake up screaming (and would've woke up the whole house!)...it was only 5:30 in the morning and I was just not ready for them to be up...

Robert comes upstairs and has an attitude...Tyler threw something and it hit him so he spanked him (a BIG no-no!!) so he was pissed off and ran downstairs -- So I tried to call Kelly up so I could take a shower -- and she finally gets up after 30 minutes and then hops in the shower for another hour!! When she finally comes upstairs she's mad at the world and being mean to the younger ones, so again - no shower for me! She starts crying and yelling at me about how she doesn't have any friends anymore because she can't text to them and they quit texting her because she can't text back - so now no one talks to her -- and of course it's my fault! (I explained that maybe she will learn to stop ditching classes...she would've gotten her texting back this week, but now she's got another two weeks added onto it!--her own fault!)

We had to run to the bread store and it's best to hit them first thing in the morning because that's when you get the best markdown stuff! (mmm, coffee cakes, lunch snacks for Harley, danish!). We left the two older kids home to have some "cool down time" and then came home and invited them to go to lunch with us. Still, mom hasn't gotten a shower yet!

Out to lunch we go...Usually we can keep Harley to two plates of food and two desserts when we go to Country Buffett...Just as we were packing up to leave, they put a "blizzard making bar" up...Harley had one ... and somehow sneaked another one...and promptly puked all over the mens' room - flooding the toilets in the process (yes, EVERY toilet in the men's room, even the urinals!). I don't know where I *was*...I don't think I was mentally there to watch Harley and keep track of what he was doing...Maybe I was busy with the two little ones while Andrew was in charge of Harley this time?

Afterwards we went to the library and got some books and movies for the kids in hopes that I can get the older kids to watch the kids for an hour or two so that Andrew and I can have some time as a couple (not dtd :) ) -- just time to reconnect. He and I have been arguing over stupid crap quite often the last couple of days (the story's on my other blog).

Since we were driving right past Dollar Tree we stopped there too...bet you can't guess what I bought! LOL -- We bought some other things too (no food items) and Harley proceeded to try to sneak a candy bar up on the belt...we told him no, that he doesn't need anymore to eat...he needs to learn not to purge so that he can eat more!! (the older kids had stayed in the van and Andrew, I, Harley, Tyler and Zachary went into the store, so we didn't have any extra hands to help out)...Harley proceeded to start beating on me and body slamming me while screaming that I am a big ass and he NEEDS his chocolate bar!! We get Kelly to come and take Tyler to the van...Wouldn't you know, we had decided to park in the far corner of the parking lot rather than the handicapped spot right in front of the store...Andrew passes Zachary off to me (because Robert refused to come and help with anything) -- and we had to do a take down with Harley in the middle of the Dollar Tree store...Then "escort" him out of the store using a two person hold (while holding Zachary on one hip and Andrew carrying the bags with our purchases).

Finally we get to the van...I decided I would drive up the mountain a little ways because I just need a little break and this is the closest thing I get to a break - when I'm driving. The whole time Harley is going off screaming but I am able to block it out to a point. After about 20 minutes of driving he is calm and we start heading back down to go home!! Maybe I'll get my shower in?

Fat chance - again, no shower for mom! Zachary's bed time hits and I am sooo ready to put him to bed....Tyler is being his usual Tornado Self and Zachary can't calm enough to sleep, so Zachary ends up staying up till 9pm...Kelly, Andrew and I get a deck of cards and start to play while Tyler is winding down some. He just gets more and more wild as the night goes on. Finally at 10:00 I try to take him to bed (and Andrew is leaving for work). We play the "I need a drink" game...I get him a drink of milk and "its in the wrong cup--wants the blue and green cup!" and proceeds to have a MAJOR temper tantrum...I am just trying to calm him so that he doesn't wake up Zachary...FAT CHANCE!!....By 10:30 he's screaming at the top of his lungs while Zachary is screaming in his bed...So I try to get Tyler to go into his room -- after all he's already woke up Zachary so at this point it doesn't matter if he's screaming in their room....

Well, that just keeps them both going until 11:45PM!! And then finally they both pass out from exhaustion -- I'm so wound up I can't sleep now...and back to I can't take shower because the sound of the water will wake them up and get them all excited thinking they are going to take a bath...10 minutes later, Tyler is screaming again so I let him come to the living room with me and he falls asleep on the floor. I cover him up and figure I'm just gonna let him sleep there and 20 minutes later Andrew gets home from work....He heads directly to bed while I decide it may be best for me to wait up...and finish watching the last 20 minutes of Without a Trace.

Finally, 1:00AM I am in bed...I must've passed out right away....fast foward to 5:30 this morning...Tyler wakes up SCREAMING! I try to coax him back to bed, but no luck...by 6:30 Zachary's up and ready to start his day.

I have a load of dishes (in the sink--I HATE a dirty kitchen!) and a dishwasher full of clean dishes...I start on that and at 7:00 Andrew gets up (has to be out the door by 7:20). I'm about in tears...Exhaustion is setting in and I have so much to do. I've not done laundry for two days so I've got 4 loads to catch up on now plus bed linens. I have to get my house vacuumed since that never happened yesterday. I already got the dishes done (well the dishwasher is running now), got the upstairs bathroom cleaned, the trash out, the fridge cleaned out. Still have to mop the kitchen and bathroom floors...Sadly, I still have not gotten that shower in :( - Kelly is sleeping in but I'm really not ready to deal with the tears and bad attitude again today...Harley is raiding the fridge (well, I put the lock on it already - which means I have to watch him closely because he gets violent when I lock the food up)--and that is why I am sitting here writing this entry rather than getting my work done!

I am so hoping today ends up being a better day than yesterday. No respite today or yesterday (Scott is out of town til next Sunday)...The older kids have to be dropped off at their dad's at 6:00 tonight...and then back to the grindstone...Andrew's paperwork, errands to both of our jobs, Harley to/from therapy, dealing with the schools and not getting my return calls about Harley's placement...Crap, Harley has an appointment with his psychiatrist tomorrow! Oh and he gets a cleaning, two fillings, a tooth pulled and a full set of mouth x rays on Friday (thankfully I'll be sedating him for that!)

And the worst part? I'm still hoping that this week ends in a bfp for me!