Marvelous Marbles

So plan #1 didn't work so well.  We moved on to plan #2 which we called Marvelous Marbles.  I made a "Marvelous Bag" with items I found at Walmart on clearance for about $1 a piece.  I got him some envelopes, white board crayons, a spider ball, stretch elastic ring things that were only a quarter for a pack, Reese's cups (He loves them but we never usually buy candy so that will be a special treat), a keychain and a few other items I found for around a dollar each or less. (Yeah, sometimes he loves things that other children don't like envelopes and keychains.) This version is much simpler. I can change up the coupons, so when I feel like he might be ready to go on outings again I can add them in on the reward coupons. Next time I might make police or ambulance coupons.

He was getting confused with how I had the last one where we'd tally up by 5s. This one will be simpler for him so he can just check off a box along with each marble he earns.

With the Checker Chart things began not going so well rather quickly.   Going on all those outings was not working well. He held me hostage at the railroad tracks, refusing to get back in the vehicle because I would not let him buy something at the store. Then he got angry because he chose the railroad tracks as part of the incentive he earned, but then after we were there for about 10 minutes he changed his mind and wanted to go for a walk instead.  He tried pinching my hand and was ready to hit me with the snow scraper if I didn't get it out of his hands in time. That was not a very fun trip. :(  Here are the coupons I made:

That is the reason why I came up with this new plan instead. Princess helped me name it.  I wanted something that flowed well with marbles.  She came up with the Marvelous Marbles.  I loved the way it sounded.  We also began a new computer sign up time sheet at home today.  Honeybunches was not very happy about that.  He was often trying to control the computer it seemed.  He'd kick people off to just go on for five minutes.  Princess was rarely getting turns.  It wasn't fair.  Now on school days they can each pick 2 one hour slots and on no school days they can pick 3 slots.  I wrote it on paper and placed that in a plastic sleeve so we can circle the time slot next to the names.  That frustrated him today the 1st time he learned about it.  He became a bit aggressive because of it.  Hopefully after a few days things will calm down with that too.  He hates changes and new things.

New Behavioral System

Above are pictures of a new behavioral system I'm implementing.  I asked people in an online group I belong to as well as got some other ideas from looking up Token Economies plus from a couple people on my Facebook page.  I combined them into something that might work better for Honeybunches.  Basically today I went to a local thrift shop, where I found all the incentives above for $5. (Yeah I know some of it might look interesting like the roll of paper, cards, calendar and other papers, but he likes different things.)  They didn't have marbles as somebody else suggested using, but I found some checkers (From checker games which probably didn't have all the pieces but will work excellent for this purpose) which can replace them with the same principle.  I made the checker behavior jar from a pickle jar I cleaned well, de-stinked and disinfected then decorated. In case you can't see 30 minutes = 1 checker for each successful behavior... 5 checkers earns 30 minutes of computer time or 30 minutes of the Netflix box... 15 checkers earns watch Netflix box with Mom or Dad; Play game with Mom or Dad; Arts and crafts project with Mom or sister; 45 minutes of computer time... 30 checkers earns go for a walk with Mom, Dad or sister dd16; 1 hour of computer time; go to train tracks for 5 minutes; print 2 papers.... 75 checkers earns go to train tracks, airport or jumptown for 20 minutes; Help Mommy plan dinner menu for one night next week; Bake a special snack with Mom; Pick something from prize box... 150 checkers earns going to the park in nice weather; June-August go to beach if hot enough; Go to buy a donut, Mc Donald's or other special outing; Go to Dollar Tree on next counseling day. 

 He will earn the checkers, but not have them taken away. That's one thing everyone agreed on that gave me their ideas. The way I'm going to do it, he can earn up to 3 checkers every half hour to start with if he does all the 3 behavior rules. As he keeps doing well, he can keep earning bigger incentives. For example when he gets the 5 checkers he can pick something from that category. If he keeps doing well and works up to 10 then he can pick from that one. The same all the way up. I'm not going to make him wait and save his checkers for the bigger prizes, but as long as he continues to do well he'll keep going up. Then when he gets to the 150, he'll pick a choice from there and then begin the cycle again at 5 checkers. 


The time chart of when he can collect his checkers and incentives. He gets home at 3:15 on school days so then it's going to go 3:45, 4:15 and every half hour from there until 7:15. On no school days it will begin at 6:00 then 6:30 and every half hour until 7 pm. I also made a tally chart I made to keep track of how many checkers he gets up to 150. Then it will begin at 5 again after he gets a big reward.

Report Card and Progress Reports

 

Second trimester report cards came home today.  Above is how Honeybunches did.  I'm proud of any progress he makes.  This time it was in:

"Reading and Literature: Comprehends inferential meaning (implied, not stated) of texts went from just Modified to Beginning to develop standard (Not yet able to produce grade level work);

Math: "Organizes, displays and analyzes data" went from Beginning to develop standard not yet able to produce grade level work to Progressing toward standard (Producing grade level work with direction and assistance)";

He's meeting the grade level standard in Art and Gym. The rest of his grades don't show any changes since last trimester.

I got 3 of his progress reports too.  The ones from his teacher, she said she'll send home next week.  I got his counseling, speech and OT ones today though.
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In Counseling: 
She states he: "Has difficulty positively expressing his feelings of frustration, anxiety and stress.  He frequently uses verbal outbursts which become very disruptive to the class as well as limit his ability to complete work assigments.  When feeling frustrated or overwhelmed, he continues to escalate until he is often asked to remove himself from the class to take a time out.  He is not able to verbalize his feelings, instead uses disruptive, negative behaviors to gain attention.  Despite these negative behaviors, he has been able to transition into counseling very well.  He also participates in social skills lesson given to his class every other week.  He has an incredible sense of humor and can be a very engaging young man..."
 
Goal: "___ will demonstrate the ability to verbalize his feelings associated with frustration, anxiety and stress in a positive manner in order to produce work representative of his ability."

Comments on benchmark/objective 1 (Learn 3 coping skills and utilize strategies 50% of the time in order to help him appropriately express his feelings of frustration, anxiety and stress and reduce his disruptive behaviors during the class) say "___ continues to work on identifying and appropriately verbalizing his feelings.  He continues to struggle with the comprehension of his feelings, which in turn hindered successful peer interactions.  Continued work in this area would be beneficial..." 

Comments on benchmark/objective 2 (Will participate appropriately during social skills group 50% of the time) say "He continues to struggle in the larger group setting and often removes himself from the classroom's social skills lesson.  Continued work in this area for ___ to remain in the class and participate would be beneficial."
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Speech and Language: 

She reports how recently he has missed many sessions due to refusal to attend or that he is sleeping at the time of his session; .  "His sleeping was usually in the morning so speech time was moved to afternoon. Since the time change, he has not been sleeping, however, has refused to come on 2 occasions." She also states how he "Continues to make improvements in all areas of his communication... is increasingly cooperative and participates more fully in speech language therapy activities...articulation skills are within age level expectations...tendency to mumble and use a rapid rate of speech which impacts his intelligibility at times..."

Goal: "___ will demonstrate increases in expressive and receptive language skills to improve communication across all educational settings"

Comments on benchmarks/objectives:
1. (Will expand his vocabulary, understanding and usage by identifying synonyms/antonyms and provide definitions of words presented in 4 of 5 opportunities) He is working on increasing his vocabulary knowledge and usage by making associations of parts of a whole with 56% accuracy, and completing analogies for 71% of given opportunities.

2. (Will produce verbal and written forms of complex sentences in 4 out of 5 given opportunities):
Continues to work on producing verbal more complex sentences, by using picture prompts for parts of speech and sentence structures.  

3. (Will state the main idea, paraphrase and answer a variety of WH questions, following verbal and self read presentation of material and increasing length and complexity with 80% accuracy) 
States the main idea 67% of presented short oral stories, he is paraphrasing, with assistance and he answers WH questions about verbally presented materials and self-read with 77% accuracy.

4. (Will complete 3-4 step complex directions involving a variety of conditional, sequential, temporal and locational concepts with 80% accuracy)
Follows 3 step directions of increased complexity 5 out of 7 presented sets of directions. 
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OT: 
She wrote: 
He "has made great strides in all learning domains, but especially the development of frustration tolerance and work ethic.  He is a self-responsible learner who is proud of his many accomplishments... His rough copy is legible to himself and a familiar reader... Computer skills continue to improve to where he can use a 2 handed hunt and peck approach to both type final copy and compose 8-10 wpm... He tends to over or under focus on mistakes, which can slow his pace..." (This one was lengthy so I didn't write everything it says such as the details of what he's working on, etc. 

Goal: "Will demonstrate improved paper/pencil and computer skills in order to complete daily writing tasks legibly at his expected academic level".

Comments on Benchmarks/Objectives:
1. {Using a 2 hand "Hunt and peck approach" to keyboarding he will type final copies of written compositions up to 10 sentences, with increasing attention to details of punctuation, capitalization and spelling, 80% of trials (Typing tests and work samples)}
She said "He continues to work on this objective, with decreased adult intervention at his request.  OT assists as needed with editing, grammar and syntax, but generally he needs only about 5-7 cues per session.  He often insists on using only one hand, but this does not reduce speed of composing.  He is an excellent typist which is the best method of producing legible compositions. 

2. Will type 10-20 wpm {(Using a hunt and peck 2 hand approach) when composing rough drafts of assigned written compositions 80% of trials (Typing tests and work samples)}
She says he "Types 16+ wpm and continues to develop his ability to think and type.  This quarter he needs cue to use both hands... Met 75% at 16 wpm. 


3. {Given adapted worksheets as needed, he will size and space numbers correctly on math assignments, legibly to himself and a familiar reader, 80% of trials.}
He prefers to use math worksheets rather than any adaptations.  He does best and output is more legible to himself and a familiar reader when cued to slow down.  His 1:1 aide follows through with all recommendations on a daily basis.

She said "He has been consistantly cooperative and happy, demonstrating a great sense of play and humor, especially with written compositions.  He now prefers to complete work/journals without cuing or scaffolding from this OT.  He continues to make steady consistent progress in all domains and when focused, is a responsible hard worker.... He continues to make steady progress in the visual motor domain.  He is a delight to work with.  It is anticipated that he will most definitely meet all objectives by the end of this IEP, as he has made such progress."
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I didn't receive his educational or behavioral goals from his teacher.  She said she'll get those to me next week, as she had a doctor appointment and had to leave early today.

Pdoc called

Bye Bye Seroquel. Hello again Abilify, but a much lower dose. Pdoc emailed me back asking me to call her. It took her so long to get back to me because she's been very sick for a couple days. She was bedridden, but is getting better. She's decreasing the Seroquel beginning tomorrow. Then she wants him on 1 mg Cogentin once a day and is putting him back on Abilify starting tomorrow, but only 2.5 mg once a day. In the past he was on 10 mg, 15 mg and 20 mg. He was never on it so low. I don't think that will work, but we'll see. She said we'll just keep a very close eye on his liver enzymes through blood work. If that is not enough, she'll try 2.5 mg of Abilify twice a day. The next drug of choice she'd try is Lamictal. She didn't want to try that now, because she said it's so slow to work. She said it goes up in 25 mg intervals up to 100 mg 2x day. She wanted to try the low dose Abilify 1st. She is against the old APs (That the 2nd opinion pdoc mentioned) because of their side effects. She doesn't want to use Depakote (Which is what she thinks Dr T her boss lady would suggest and something the 2nd opinion doc suggested) because it's metabolized through the liver. She didn't agree with the 2nd opinion pdoc questioning his Bipolar, because as she said "He clearly cycles" and Celexa made him suicidal. She also said she's going to research some of the newer antipsychotics (New Risperdal and a few others she mentioned) to see what she can find out about them and if our insurance would cover them with prior authorizations. Insurance often denies requests for various reasons.

Honeybunches Lip Puckering

The lip puckering stuff is even worse today. I wrote to pdoc giving her another update, but still haven't heard from her. I know she's going on vacation sometime this month. Maybe it's this week. I timed him at 3 separate intervals today for two minutes each. 1st time he had 58 lip puckers. 2nd time was 63 and 3rd time was 48. That is not good. I worry most about the social aspects of that continuing to happen for him. What will the children at school think? He doesn't even realize he's doing it. It happens when he's talking, eating, standing, sitting, on the computer and anything else. That doesn't seem to change it at all. It's getting a bit concerning because although he had Tardive Dyskinesia on the Abilify, I don't remember the lip puckering being this frequent. That time he also did tongue stuff, that he's not doing yet. I asked pdoc how long the Cogentin should take to work if it's going to. He had a pretty good day at school. He did have a couple smaller incidents there. (Went on the preschool structure "He knew he should not have been on". Then another time where he got really mad, slammed his Ipad on the table, teacher said something, then hestormed out of the room and put himself in the time out space. After that he was okay the rest of the day his book says. At home so far, he was a bit irritable right after school, but seems okay now. He went for a walk with his oldest sister "Angel" (dd16) and did well.

 I just got an email from Honeybunches teacher. Part of it said: "Hi I forgot to write in his book today that his lips were moving constantly all day (the lip puckering) (1:1 aide) took data through out the day the worst one was 57 times in a minute. It seemed like it was interfering with his speech today. A couple of times, I had a very hard time understanding what he said...." another part said "His mood swings seem to be a little more stable he has been in a very good mood the last couple of days. He even let me hug him this morning. Although he was a little upset with me this afternoon when he slammed theI-Pad down on his desk and I took it and said in a very firm voice that is not how we take care of the I-pads. I think he was more surprised than anything. He made a be-line to the time-out room. When he came back he was fine. I made sure I praised him for acting appropriately in the classroom when he came back. Overall he had a very good day..." His teacher is good because she is also cautious about the Lithium being higher, asked if he needs to be drinking more water and if they should begin using his sunscreen now that the weather is a bit nicer.

I wrote to the pdoc about both the frequent incidences I've noticed, what the school noticed as well as what the 2nd opinion pdoc said yesterday.  I'm still waiting for a reply.  

2nd opinion pdoc appointment

At the appointment it was Dr S (Who is the medical director) along with two residents. It was well worth the trip as he had new ideas. It went well. He spent 20 minutes going over his developmental, behavioral, medication, diagnostic, family and other histories. Then 20 minutes with Honeybunches alone. Then another 20 minutes with us going over his recommendations. Amazingly Honeybunches did really well in there alone. I was nervous how that part was going to go, but agreed to try it.

Dr S believed that Seroquel was just as bad metabolically as Abilify so he didn't understand that switch. He actually thought that out of the atypical antipsychotics Abilify was one of the easiest on the liver, but he made it clear he did NOT think Honeybunches should go back on it. He said he'd recommend to do things with a three step plan as follows:

Step #1: See how he does with out any antipsychotic on less medications, by taking the Seroquel away and not replacing it with anything. (Which would just leave him on Clonidine, Tenex and Lithium). (He suggested this because of his "Fatty Liver" as the antipsychotics are the most likely cause.) I told him about the man in his belly who used to make him do bad things. He said because Honeybunches's older now it might not be an issue. He noticed Honeybunches doing the lip thing, which he believes might be TD or might just be part of his Autism. (Interesting, because Cogentin helps it, but this doc said it doesn't make true TD go away, because it would always be there even when coming off the offending med... I found that interesting too...)

(Hahaha... I can see suggestion #1 lasting only a couple days probably so that would be a very quick trial.) I think I'd trial that on a weekend or during the week of from school coming up in April, if the pdoc agrees.

Step # 2: If he can't handle #1, then add in a 2nd mood stabilizer such as Depakote, Tegretol or Topomax. Those are the three he suggested. I mentioned how I didn't think Tegratol would be a good idea because of his negative reaction to Trileptal. He said although they are cousins they are different so he should not have the same reaction.

Step # 3: If steps 1 and 2 don't work he said he'd suggest adding in a low dose "Old fashioned, conventional antipsychotic". The three he mentioned were Haldol, Perphenazine and Prolixen. He said although they do carry more of a risk with Tardive Dyskinesia, they'd be easier on his liver. He said just using a low dose of one of the old ones could be equivalent to the "High amount of Abilify he was on previously". He said the old ones take a fraction of the dose to be just as or more effective.

He said that the fatty liver is life threatening while Tardive Dyskinesia would not be. He believed that Honeybunches's ADHD, Generalized Anxiety Disorder, Receptive-Expressive Language Disorder and even possibly his "Mood liability" from the "Mood disorder" all could be related to his Autism Spectrum Disorder. (Notice he didn't mention BP and was surprised when I told him how Honeybunches was diagnosed with it at age three.) I asked him if children with Autism get suicidal. He said "No". Then I asked him about if he didn't have Bipolar would Lithium still work. He said it might. (I don't agree with him about the Bipolar being part of the ASD, but do agree with the ADHD, language disorder and GAD possibly being part of it.)

I wrote to his regular pdoc to see what she wants to do. I told her I trust her judgment a lot more than a doctor who only spent one hour with us. (No more than an hour as he was very strict on the time limits steady looking at the clock, which I hate.) I appreciate the new insight though.

I signed a release so Dr S can send a copy of the report to her too. So I'll see where this goes from here. It was good to have new ideas. The pdoc he sees regularly thought that the old APs would be worse for their side effects, which seems to be opposite thinking than this doc had. She made it pretty clear before that she didn't want to touch the old ones. I was surprised that he mentioned 2 mood stabilizers, but he said some children do really well with two instead of an antipsychotic.

So I guess now I just wait and see what if anything his regular pdoc wants to do. While I am waiting, I can wait to see if DCF comes to pay us a visit. While alone, Honeybunches disclosed some old info about Shnooks doing something inappropriate to him. DCF should have it in their file, because it was years ago (2007-8ish) when I told them something might have happened, but they blew it off because they said Honeybunches was not an appropriate child to interview, gave Shnooks a screen which showed he was at low-risk to offend and did nothing. Technically, I believe that this doc has to file a report anyways, although I explained what I knew (Plus how we were not exactly sure if anything did happen with Honeybunches) in detail. I don't want to go into too many details about that, but Honeybunches didn't talk about it since 2008 until last week when we were driving down the street. We seen Shnooks. He said "Whose that? Oh yeah the boy who _____". :( All I can say is I know we made the right decision not letting that boy back into our house. I'm glad he left in 2010. Sometimes I am mad at DCF for pushing for us to take him back in 2008 after I disclosed what Honeybunches told me back then. Shnooks was in their custody through a CHINS, at an RTC which closed. They should not have sent him back here. We never should have taken him back. Oh well, I know we tried to give him a good life. So I think the doc probably did file, if for no other reason than to be a good example to his residents.  Hopefully it will only go as far as DCF's desk, because it should all be in their records plus we haven't had contact with Shnooks since the Summer of 2010. 

On another note, the Seroquel seems to be giving Honeybunches symptoms of the Tardive Dyskinesia again.  School told me this morning that yesterday and in the few minutes he was there today before they called me, that they noticed lip puckering like he was going to blow a kiss and holding it there. I wrote to his pdoc, who got back to me quickly and put him back on Cogentin.  That's one thing I love most about her.  She always returns my calls or emails quickly. 

SPED Director Advocate and Momma Was Right...

Today I was surprised to get a nice hand-written letter from the SPED Director in the mail!  It said "Thank you for serving on the PAC.  Having officers is required for the DOE audit - and I am grateful to you for doing this.  Today it was great to see you and even better to hear of the wonderful progress (Honeybunches) has made.  Although I will retire in September, do know that I will be happy to advocate for you and (Honeybunches) in the future (Anytime, if needed) at no charge...." and he gave me his home phone # saying to keep it for future reference!  That's awesome.  I don't think it's possible to get a better advocate than a retired SPED Director and even better yet... for free! 

Honeybunches pdoc called me again on Monday.  His Lithium level was only .7 at his last blood draw.  I told her that he'd need the ER version in order for his level to go up.  For some reason, the regular Lithium seems to go right through him.  So now he's on 450 of the ER version.  We have to get his blood drawn again in about two weeks.  Yesterday and today he's taken the Geodon only in the morning.  Tomorrow he's done it altogether.  Then he'll be on the Lithium ER, Seroquel, Tenex and Clonidine for his psych meds.  There was no school today because it was a snow day although it didn't begin snowing until this afternoon.  Honeybunches has been irritable most of the day, but did well at counseling. 

Honeybunches IEP Meeting and Seroquel

When we seen the pdoc last Wednesday I let her know how much I don't like Geodon for Honeybunches as it seems like it's too much but also not enough and it's causing his sleep schedule to be all messed up.  She placed him on Seroquel XR.  For the 1st two nights he was on 100 mg, but now he's on 200 mg which is where she plans to keep him for a bit.  Then on Friday he'll come off the Geodon.

We had his IEP progress meeting on Friday which the school requested. It went pretty well.  The school is mostly concerned with his sleeping and social regression. He's not wanting to be around the other children much at recess or during other activities. I told them we've noticed the same thing at home with him wanting to eat dinner in his room alone. Next year he was supposed to move onto a new school that is the town's 5-6th grade school, but the school psychologist, his teacher, the SPED director and I all agreed it will be best for him to stay at his current school in the "Integrated Learning Center" with the teacher he had in K-1st grade. It's a "New innovative program for elementary aged students who will benefit from added emotional and behavioral supports". It's a whole new wing of the school that they have for that including a classroom, their own computer room and the new big time out space or "Quiet room" as the principal called it when she took me on a tour. They might be able to break it into two separate classes with two teachers next year depending on the budget.

   I had concerns about the transition for many reasons. The school psych said she has been trying to be optimistic, but she was getting very concerned too.  She said that although the teacher he was supposed to have next year was well qualified, there are less resources at the school for Honeybunches and less people to call upon if he needs assistance.  At the current school there are the teacher he'll have and others who are specially trained to deal with children who have more behavioral needs.  The school psych also said that his needs are at the more severe end of what the teacher at the other school can deal with.  

 At least this way Honeybunches will be familiar with the staff and won't have to change schools. I did voice some concerns about how much progress he's made with his current teacher and how I want to make sure he'll be challenged academically. They said that Mrs Understanding his current teacher can plan his academics with Mr M the new/old teacher. They also told me that he might be able to do "Pull-Outs" to go to Mrs Understanding's class for some academics. They asked me if I am concerned that he won't have many peers his age to interact with because he'll remain at the 3-4th grade school, but there may be a couple other children in Mr M's class who will be in his grade. I'm not really concerned about that. He plays better with younger children anyways. His teacher said socially he's more on a 2nd grade level. The SPED director suggested we meet again in May to go over his summer planning and once again his progress. His current IEP is good until October 31st, but the SPED Director is going to re-do it at the beginning of September, because the 3rd week in September he's retiring and we'll have a new SPED Director. It's great that he'll get that taken care of before he leaves so I won't have to worry about the new one cutting anything. I told him I'll miss him and all that mushy stuff. Made him feel special lol.

The SPED Director asked me to be the SPED PAC (Special Education Parent's Advisory Counsel) President!!!! I agreed.  That made me feel special.  I've been going to all the SPED PAC meetings since Honeybunches was in Kindergarten though.  I've been the only one at some of the meetings, so I guess it's well deserved.  

DH has been unstable for a few weeks, but today and yesterday were a bit better.  Things were rough for a little while with him.  He was Mr Grouch and doing a lot of isolating.