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It's Been A Long Road...

Honeybunches has been doing pretty well. He's adjusted well to middle school.

On the other hand, my Princess (17 y.o dear daughter) is really struggling. IDK exactly how this began.
At times, I wonder if there is more going on with her because she reminds me so much of Shnooks. Princess does have a history of cutting and suicidal thoughts. Things with her were okay until a couple years ago. At that point, we spent four nights in the ER that year, but a bed never became available. She seemed to be okay on her own. Back in October of 2015, she began spiraling downhill real fast. One day in that month she had a seizure of unknown origin.

In February this year she became suicidal again and ran away. After finding her and spending four nights in the ER, she was placed in her first psychiatric hospitalization. She was there for two-and-a-half weeks until the beginning of March. They did not diagnose her with anything, but began her on Tegretol, Risperdal and Trazadone. She came home fairly stable and more happy. The Tegretol made her deathly ill severely decreasing her white blood cells and platelets, causing fevers, swollen lymph nodes and other issues.  The Risperdal caused her liver enzymes to go through the roof and liver inflammation. She had to come off both of those. We tried going the natural remedy route, which was going okay until she met with the psychiatrist who told her how dangerous herbal supplements were because they are not regulated by the FDA and yadda yadda yadda so from that point she refused to take them. Interestingly, she seemed fine for a few weeks.

On Monday, March 11th the school counselor called me stating how Princess said some very concerning things about life not being worth living anymore. She went to her outpatient counselor that afternoon and stated similar things in more detail. The counselor brought me in and we called crisis under her advisement. After three nights in the ER, they found her a bed at a CBAT which is like a step down from a hospital (Not locked, but besides that similar or more like a short term residential). That was an interesting experience. First they put her on Zoloft, which made her worse instead of better. When her and I told them it made her worse, they increased the dose lol. Finally, at the beginning of last week they took her off, but didn't replace it with anything because "Her time was up..."

Here are some updates I posted to the support groups I belong too... 

APRIL 28TH:
Princess got discharged a couple hours ago.  We are back at the local ER awaiting crisis. Interestingly, she wondered away from the CBAT this morning (Followed by staff), found glass on the street that she cut herself with (Said staff said they couldn't touch her or stop her off the CBAT grounds), was searching for a bridge to jump off and THEY STILL DISCHARGED HER! Nobody called me! She called to tell me earlier to tell me all this, but when I asked staff at discharge they confirmed everything like it was no big deal. "Tasia told me she wandered away" I said. "Yup, we went for a walk". " She said she found some glass and cut her arms..." I said. He responded with "Yup she did". I asked if she was looking for a bridge. " Yup" was his response.  "Her time was up". The system is so broken. We went home for a minute to call crisis, who sent us back to the local ER. The doc medically cleared and Section 12d her (Mandatory psych hold). Crisis should be coming to talk to us sometime tonight. Thankfully I have tomorrow off. Doc said she needs hospital not CBAT as it's a higher level of care. Here we go again. Everyone here is shaking their heads about her discharge. I wonder how many nights we shall spend here in the ER this time?

APRIL 30TH:

This morning I went to go see Princess at the local ER where she spent the night. Crisis was there before I even got there. When I arrived, the man talked to me saying he was going to begin the search. About an hour later, he said they secured her a bed at a psych hospital about an hour away from where we live. It's well-reputed and part of a big chain. The ambulance took her, but my mother and I drove down because I had to do all the paperwork. That place is huge (104 psych beds, but only 24 for children and teens). This place has a good reputation and pretty good reviews. I've never heard anything bad about it. I am hopeful.

We got there before the ambulance. It gave us time to fill out the paperwork before she arrived. They have her on a Section 12 (Mandatory 72 hour hold, which doesn't include weekends). That's a good thing. After she arrived, we went upstairs to the unit. All the staff that walked by introduced themselves. Everyone seems very friendly. The nurse did a good job of looking over her paperwork and recognizing her allergies before we got there. :) The crisis place put together a thorough history which they passed on. I got a very good first impression of this place. Their visiting hours are longer than the other place and work better with my job schedule. The only bad thing is that they say no children under 18 can visit on the child/adolescent unit so Honeybunches can't go see her. Eh, he might not want to anyways because he is mad at her for leaving him. When I voiced my concerns about places rushing her out, the RN who did the intake told me they won't discharge her until she is stable and even then may refer her to some aftercare if that's necessary. I read online reviews online stating that they are very detailed with their aftercare plans, which sometimes include step down programs before coming home. IMO, that's a good thing especially after our experience with the CBAT she was discharged from yesterday. I am optimistic that this might be the place that can help her.

So, that's my update for today. Hubby, Honeybunches and I are holding up okay. My mother and I went out to eat at a buffet and did some shopping before heading back home. That was a good stress reliever. I figured I would remember my own advice I give to everyone else... "Take care of yourself..." I didn't see Honeybunches for more than an hour today though which makes me feel bad. Tomorrow after work, I'll spend some quality time with him.
 -------------
NEWER UPDATES:

 5/2 Update #1: 

Princess hospital just called me. The nurse let me know that they had to do a personal and room search on Princess and her roommate. Turns out, they were giving each other tattoos somehow. Princess got a hold of a tiny little razor, which they found in her possession. All she told them was "It was magic". She tried re-opening her cuts from the other day. The nurse said they did not make a big deal out of it. They just cleaned and put bandaids on the wounds. The phosp took all her privileges away and threatened her with possibly having to go to the adult unit since she is 17 and told her how it's no fun there. They are separating her and the roommate. They'll have no contact. The nurse said she hadn't seen this side of Princess. They are not allowing her access to anything that could possibly be used as a sharp.

 

5/2 Update #2:

Princess phosp called again. They said she got the razor-like object from her bra with an underwire. She proceeded to cut her arms, belly and legs. She also punched a wall. The tattoo she tried to do is on her hand. They put her in a private room for the night.
I will update more here as the days go by, to keep a journal of her experiences for my future references. My facebook page has too much family on it and IDK if I want everyone knowing every bit of our business. 

Annual Review with New Team

This morning we had an almost two hour annual review with the new middle school team. Here are some updates from staff:

Teacher:

• Great transition
• In reading and math he participates about 1/2 the time.
• Polite
• Hard to redirect or reteach, especially in Math. 
• Not working on a ton of academics, mostly focusing on social skills, staying safe. 
• 60-70% of time he's on task.
• Lots of walks around the school.
• Working on being "Flexible thinkers".
• He's mentally and emotionally "Done by noontime". After 12 pm, the rest of the day is "Behavioral Management". 
• Discussed the idea of changing schedule to 7:45-12:35 every day. 
• Overwhelmed with large groups
• Hold off on adding in UAs (Unified Arts)
• Uncomfortable with other children
• Has not organically used other children's names
• Defaults to adults 
• Working on how to be appropriate during periods when behavior escalates.
• Has ability to advocate for when he needs a break.
• Coping well, even in the absence of mechanisms he had available in previous years. 
• Discussed importance of MCAS vs Alt in regards to graduating

Counselor: 

• Increased independence with lunch (Going in line, getting own tray, bringing back tray). Continues to eat lunch in her office. Would like to see him eat in the cafeteria eventually. 
• Has social skills group with two other students. They interact well.

Speech:

•  Couple refusals when not expecting to go.
• Working on relationship building
• Needs lots of cueing
• New goal: Holistic, bigger picture view of events and situations.
• Wants to do 1 of the 2 weekly 30 minute sessions with a peer to work on conversational skills. 

PT:

• Seems overwhelmed even in the hallway
• Functional skills for his school day are there. 
• Vocationally and physically will be able to participate in work.
• Transition goals to other settings than just pull out such as gym.

OT:

•  Sensory seeking behaviors to self regulate
• Teach him sensory skills he can do independently such as heavy work

Important Updates:

1. Continue with "Shorter School Day". Modify to be 7:45-12:35 each day. Every other day (Red Days) will be in 1st block with three 8th grade peers. 2nd semester consider adding in a UA in the morning, with a para. 

Goals:

1.  Math: 1-2 step equations; integer work; test taking strategies
2. Written Language: Topic development; utilizing and including supporting details, paragraph structure
3. Reading: Fluency; active reading strategies; meaning from text
4. Counseling: Age appropriate peer interaction; social awareness
5. Speech: Receptive/Expressive skills, descriptive skills, semantics, main idea and details from written and oral stimuli
6. PT: Generalization of skills across all settings
7. OT: Increasing sensory strategy awareness and use, technology use, functionality of handwriting

We also discussed the importance of him taking the MCAS, if we have any hopes of him graduating. In the past, I was told from his previous teacher that children can pass with the MCAS Alt if teachers show that they know certain things sufficiently. This morning I was told that is not the case. If a child does not take the MCAS, they only get a Certificate of Completion. I am going to spend some time in the next few days researching this. They did say that if he fails the 10th grade MCAS (Which is the one they need to pass to graduate), that they give them three tries. If they fail all three times then the teacher can make up a portfolio which the state may accept instead. They said that is totally different than the MCAS Alt though. They did try to drop direct PT services today, because he's not getting gym with his shortened school day. It would also be too overstimulating for him. The teacher is going to talk to the gym teachers to see if there is a time that the gym is free that she can bring just her class there to practice PT skills. I'll update more when we get his IEP.  They're going to conduct a new FBA and make a new Behavioral Intervention Plan. Much in his previous one is no longer valid at this school.

Shorter School Day with Optimism

A lot has happened since I last posted, although it was not that long ago. The SpEd Director granted my request for a "Shorter School Day" and amended his IEP. For now, he'll not be going to any of the UAs or Gym. We'll conveine the IEP team on October 8th for his annual review and program review. From there, we'll discuss adding back in his UAs. Part of the SpEd Director's email said "We need to be thoughtful about his schedule and add things in to increase his independence and success levels in a planned manner".

She also let me know that the classroom aide in his main class is going to be Mr. N (Who was his 1:1 aide from 1st through the beginning of 4th, when he got laid off). Just knowing that, eased my anxiety substantially. His presence will be such a blessing, as it's a link with somebody who knows him and his needs. He also understood Honeybunches more than the teachers did much of the time.

 It seems like the school is trying to do all they can to help his transition to middle school be a successful one. The adjustment counselor he'll have also sounds great. She's going to get him from class a few minutes early every day for lunch. Then they'll go through the lunch line to get his food before all the other children get there. The plan is for him to eat in her office with a very small group until he's more comfortable. On days when he gets out at the regular time, they are letting him out three minutes early before the halls get crowded.

For tomorrow, Princess plans on going with him a few minutes early so they'll be the first ones in line for breakfast. If the cafeteria gets too noisy for him, the adjustment counselor said they can go to her office as she will be there early. IDK how he'll be able to tolerate breakfast, but he wants to try it. They're NOT making him go to the first day assembly. From breakfast, the adjustment counselor will walk him to class where he'll stay with either the teacher or class aide. They'll present the information to him and one other student who likely won't go to the assembly either. I've been in touch with his teachers and the nurse. The nurse sounds very understanding. She suggested I leave a stash of Gatorade and waters in her office.

 

Middle School Nightmare Schedule

We received Honeybunches middle school schedule in the mail yesterday. It looks like this:

It gets even better! One day is a red day with the next being a blue day. It rotates like that throughout the school year. You can see how those make the schedule look to the left of the pic.

I proceeded to write the following email to the IEP Chairperson, SpEd Director, Dean and Superintendent:

"I have concerns regarding both my children's schedules.
I'll begin with Princess --'s first, as her concern is simpler. I see she was placed with Mrs. N for Algebra 1A. It had been decided at a previous IEP meeting that she was not to be placed with her unless she was the only teacher teaching the specific class she needed. This was due to a teacher-student conflict and clash of personalities. Princess has mentioned dropping out of school before taking her class and that she'll likely get expelled having to deal with that teacher.

Now onto Honeybunches --'s schedule...
I see he has music on red days with Mr. Music Teacher in B block. I have concerns that music will be too overstimulating for him. It's especially concerning in the morning, because then he'd likely either have behavioral issues or shut down for the rest of the day. I see in last year's handbook that art, drafting, business or foreign languages are other options. I can see foreign language being too frustrating for him, when he struggles even with the English language sometimes. I am thinking that Art, Drafting or Business would be a better fit for him. With his sensory needs relating to his Autism and previous struggles and behavioral issues at (Elementary School) relating to Music, I think putting him in that class is setting him up for failure. I also think it will get him off to a bad start at (Middle School). I don't understand why that class was chosen for him, when I thought I made myself pretty clear in previous emails about his sensory overstimulation related to Autism and how that class would not be a good choice for him.

Another concern I have is with Woodworking. Although that is a less stimulating choice for him, the end of the day is known to be when he struggles the most. I also have concerns about him having access to saws, chizzels, hammers, electric sanders, nails, screw drivers and other dangerous weapons... I mean tools... that could be used as weapons... that could cause serious bodily injury to another child. I honestly fear for the safety of the other children in that class, if Honeybunches becomes frustrated, overstimulated, his Bipolar becomes unstable or something else in the day might have caused him to be in a bad mood. I thought I'd be blunt, in case something serious does happen at least I gave you all warning of his potential. His lack of impulse control related to his diagnoses (Bipolar and Autism) could have serious consequences in that class especially without a 1:1 aide who is restraint trained. I would hate to see the injuries a child could be subjected to at the hands of somebody who might have a moment of insanity and not remember what happened or by a child who does not realize how his actions affect other children but acts on impulse and the "Fight or flight" reaction often times when he feels unsafe in a world with too many people. There are times hen he is not in control of his body, because of his Bipolar Disorder.  I truly would hate to see another child get hurt due to (Middle School)'s policies of placing children who can't handle them into these UAs just because they might be a graduation requirement. We could see how it goes (And hope for the best), if that's what you all insist, but it would not have been right for me not to give you prior notification of the potential for another child or staff member to become seriously injured in that class. My conscience will rest easier now. (Plus, documentation that I let you all know in case something serious does happen in that class which ends up having legal ramifications against Honeybunches. You all would have had prior knowledge that it was a possibility, which puts it in your hands too and not just his.) At home, we hide all our tools, keep knives out of reach and don't let him use any of them for safety reasons.

How many children are going to be in his Technology, Gym, Music and Woodworking classes? He has only been in substantially separate classrooms since Kindergarten. His class for 5-6th grade (Mr. M’s) had 4 students, the teacher and 3 class aides. Going from that to these general classes is too big of a leap. I spoke with Honeybunches. He is totally against music class ("Not gonna do it"), but said he'd try woodworking if he's not in a bad mood. I thought I'd let you know his input on things too."

I hope I did not go overboard with this email. Some people say that I should not have told the school about the possibilities of tools becoming weapons in woodshop as they might perceive that as a threat. I did what I always do.... What I believe to be best for Honeybunches. I am awaiting a response back from the school district. In the meantime, I've begun drafting letters to all his teachers regarding his diagnoses, strenghts, challenges, what has worked and more about him. It's similar to the "All About Me" pdf I made at the end of the previous school year in preparation for this upcoming one, but more condensed. I left out parts about his diagnostic history, medications and things like that which don't need to be known by everyone at the school.  For example, technology and gym teachers don't need to know that. I did, however, let the gym teacher know about him being on Lithium which can cause toxicity if he sweats too much and also on other medications which put him at high risk of heat exhaustion and heat stroke. I will email those out at the beginning of next week. Hopefully by then we'll have his schedule fixed. 

Last night, I actually spent some time researching public virtual schools here in MA. It looked like a promising possibility, until I got to the part about mandatory MCAS/PARCC testing. At school he does not have to take either, as the teachers do an alternate assessment. That made me think that online schooling would not be the best option for him either. The more I learn about this middle school, the more I believe it won't meet his needs. The only way to get him into another school is to let him try and (Sadly) struggle. Only then, will I have the proof I need for a good debate. Knowing my son has to fail before getting the help he needs is one of the toughest things about parenting a child with special needs. 

Then there is DH, who always seems to carefree. That's just his personality. It's good sometimes because it kind of evens my worrying about everything all the time out. At other times, it honestly gets annoying though. 

Honeybunches anxiety has been very high these past few weeks. I know it's all related to transitioning to middle school. He struggled with even small changes. He refuses to sleep in his room. He won't even go in there at night. He's been sleeping on a toddler bed mattress on the living room floor while I sleep on the futon. His separation anxiety has also been very high. He's had some struggles at tutoring. I have to stay with him at the sessions because he was having some behaviors (Threats, running out of the building, refusals, etc) that made the tutor uncomfortable. This is the last week of tutoring. Next week, there are two orientation programs and a "Now that I have my schedule tour". We also are planning on having him go on Friday, without other children around, to meet all his teachers. Then on the 31st, this school year begins. Any guesses on when I'll get the first phone call?

All About My Child and All About Me

I made an "About my child" pdf to give to all Honeybunches new teachers. I thought I'd share what I did, in case others are interested in making something similar for their children's teachers.

I put a picture of Honeybunches up top. I made it easy to read with bullets. Here are the contents:

Name:
Age:
Strengths:
Favorite Things:
About My Child:
Diagnoses and Health:
Challenges:
School Placement Info:
What has worked:
What has not worked:
Family:

Honeybunches also completed some worksheets himself.

All About Me!

My Name _________________________

Date ______________________

Picture of me:

 

Picture of my family:

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         

More About Me:

My birthday is __________________________________________________

I am going to be _______ years old!

These people and pets live with me:

When I grow up, I want to be __________________________________________________________________.

My Feelings:

What makes me happy: ___________________________________________

_____________________________________________________________

What makes me sad: ______________________________________________

_______________________________________________________________

What makes me mad ______________________________________________

__________________________________________________________________________________________________________________________________

When I get mad, what calms me down?  _____________________________

________________________________________________________________

________________________________________________________________

I am afraid of _____________________________________________________

_______________________________________________________________

Things that make me nervous ­__________________________________

__________________________________________________________________

What I do best _________________________________________________

_______________________________________________________________

________________________________________________________________

When I am sad, what makes me feel better _________________________________________________________________________________________________________________________________

My Favorite Things:

My favorite foods are:

          Breakfast ____________________________________________________

          Lunch _______________________________________________________

          Dinner ______________________________________________________

          Snack _______________________________________________________

My favorite toys are _______________________________________________

My favorite color is ________________________________________________

My favorite TV show is ____________________________________________

My favorite movie is _______________________________________________

My favorite person is ______________________________________________

My favorite book is ________________________________________________

My favorite song is ________________________________________________

When I am not at school, I like to ____________________________________________________________________________________________________________________________________

In the Summer, my favorite activities are ____________________________________________________________________________________________________________________________________

I help others by ­­­­­­­___________________________________________________

__________________________________________________________________Other things I like and enjoy are ____________________________________________________________________________________________________________________________________

School

My favorite things to do at school are ______________________________________________________________________________________________________________________________________________________________________________________________________

What I like best about school

______________________________________________________________________________________________________________________________________________________________________________________________________

What I do not like about school­­­­______________________________________________________________________________________________________________________________________________________________________________________________________

Hardest subject at school ____________________________________________________________________________________________________________________________________

Favorite subject at school ____________________________________________________________________________________________________________________________________

I want to learn more about ____________________________________________________________________________________________________________________________________

What I like best about (My current teacher) has been ____________________________________________________________________________________________________________________________________

My New School:

At my new school, I look forward to __________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Things that scare me about my new school are

________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

In --^th grade, I want to accomplish

______________________________________________________________________________________________________________________________________________________________________________________________________

Overall, I feel

 

                                                  And

       

         __________________                          _____________________

About coming to-----!

Beginning School Year Accommodations

Thanks to a 3rd email and CC'ing the Superintendent, I got some things accomplished to help Honeybunches begin his journey to middle school with as much chance for success as possible.

Here is a re-cap of my requests and the important pieces of the school district's response:

1. His current behavioral plan, which references the "Time out space" (The little padded room which existed inside his classroom for 5-6th grade that I always wish I had at home lol) which does not exist at the middle school. I mentioned how we needed to come up with 1-2 other "Safe places" where he could go if things become too much for him sensory wise and an alternative way to deal with unsafe behaviors. I asked about the adjustment counselor he'll have and Officer S who he's familiar with (The school resource officer). I mentioned how pieces of his plan such as home-school communication, sensory breaks, restraint, life space interview and self regulation should still be implemented until another plan is put in place.

I   

     IEP Chairperson's Response:

      "We can absolutely identify appropriate safe spaces. Certainly (Adjustment Counselor)'s office is a natural choice, though it is important to have alternatives as well in case she is out or otherwise engaged....  The Special Education Suite (As another option), as it is the same staff members repeatedly that (Honeybunches) may already know or will quickly become familiar with... Officer S largely deals with issues once they have legal implications.... I would suggest we implement all items of the current behavior plan that are plausible from the start. This is an important aspect of setting things up clearly for (Honeybunches) from the beginning to support his ability to adjust during the transition. My recommendation is to wait a number of weeks prior to developing a new plan so that we have both the time to see any changes in his behavior or patterns, as well as the opportunity to identify potential solutions with some confidence."

2.  I wrote concerns about the cafeteria being too overstimulating for Honeybunches at lunch time, how he voiced concerns about not wanting to go to middle school because of lunch time with "Too many kids", asked if we could come up with another place he could go eat lunch. I also asked about the class aide accompanying Honeybunches to his UA and Gym classes because I have concerns how both of those environments will likely cause him to struggle more behaviorally because of overstimulation and anxiety. I also mentioned how I would have been more comfortable with a 1:1 aide, even for those parts of his day.

 Response:

1.     "It is my desire to have the classroom aide present in the room(s) where (Honeybunches) is attending his Unified Arts and Physical Education classes. In keeping with our desire to start things at (Middle School) for (Honeybunches) in a manner that will promote consistency, I am hesitant to have the aide act in a 1:1 capacity because it removes any incentive for (Honeybunches) to increase his independence and removes the opportunities he might otherwise have to develop the emerging skills he is already showing. Having the paraprofessional present will provide the additional support in terms of assistance navigating social interactions, ensuring (Honeybunches) understands directions, and things of that nature, such that he is being set up for success. Additionally, having the paraprofessional present provides a trusted adult (Honeybunches) can use his words to communicate his feelings to when he is processing emotional responses during these times. This is a crucial element in helping to distinguish what behaviors are the result of emotional dysregulation and what behaviors serve other functions for (Honeybunches), such as escape from task demand. This approach provides (Honeybunches) the support without limiting him in the form of dependence on the adult in question."

I have learned to read into words. "It is my desire..." does not mean something is going to happen! He did make some good points though.  

Response about lunch:

1.     "We can absolutely implement alternative solutions for lunch. The classroom is unlikely to be a good solution because that is also the time staff will be taking their lunch. There are several students who eat lunch with (Adjustment Counselor)t to start the year, and there are a few spaces in the Special Education suite that students can utilize to eat lunch while we work towards building their readiness to navigate the cafeteria. Again a primary factor to consider is the balance between avoiding undue strain and stress on (Honeybunches)'s part with limiting his opportunities to grow and develop the skills necessary to navigate the lunch line and cafeteria setting. It all starts with (Honeybunches) feeling successful though, and if that means eating lunch in an alternate setting to start, that is certainly appropriate."

3. I mentioned concerns about the 1st day of school assembly being too overstimulating for him. 

Response:

1.     "I agree with you about the potential for the assembly to be stressful for (Honeybunches). It should not be difficult to have an alternative for him during that time. As the year progresses we will want to work towards increasing his ability to tolerate and navigate these types of assemblies, such as sitting in the back row, increasing the time he is able to be present, increasing his utilization of processing and regulation skills. One of the many benefits of a program like the program with Mrs. C is that important information can be presented in the small group and repeated from time to time."

     

      4: I wrote about concerns regarding changing for gym (How he can change and dress himself but sometimes needs help getting his shoes back on and tying them, asked if shoes that tie are mandatory and my hopes that the new OT he'll have in middle school will have better luck teaching him. I wrote about these no tie laces.

 

1.     "Accommodations can certainly be made for shoes in physical education class. In my experience, as long as there is appropriate grip on the soles of the shoes, laces are not a key element. The sneaker requirement is more to avoid sandals, heels, dress shoes, boots, and other footwear that limit participation and increase the risk of injury. I am thrilled to hear you obtained those laces and am excited about (Honeybunches) developing both the skill of lacing, and developing functional alternatives."

      He also mentioned how we previously discussed another potential visit with Honeybunches and his teachers for the week before school begins. He suggested that Friday as a good day, because the teachers are "Duty free" that day. They also have another orientation program on August 24-27th.