In So Many Words

I haven’t written much about our daily lives lately – there has actually been so much going on that it’s been hard to distill it into a coherent blog post. The other day I woke up early and was thinking about where Michael is with things right now and what I want to focus on in the immediate future.

So, please take this as a reflection of my thoughts about our personal situation at the moment and not an editorial on how anyone else should think or act with regard to their own child.

Third grade so far has been a highly positive experience for all of us. Michael’s teacher is extremely good, and the whole team seems to be working together quite well towards the goal of encouraging Michael towards more independence in his organizational skills as well as self-regulation.

Of course, there is always the tendency to move too fast towards lowering the level of reinforcement and support. When people see success, they seem to want to breathe a sigh of relief and say, “Okay, that’s taken care of.” But I see it as a much more gradual process. I think the first sigh of relief should be that we have found a level of support that is appropriate for him right now and that we should continue at that level until he is clearly showing that he doesn’t need it so much.

When anyone on Michael’s team mentions pulling back in any way, I tend to panic and react negatively to the suggestion, not because I don’t have the same desires as they do for his independence, but because I instinctively sense that he needs an extremely gradual transition towards a different kind of support than he is currently getting.

(Ironically, the day after I wrote this the Learning Support Teacher was talking about lengthening the interval at which Michael earns checkmarks toward his rewards. For now, we are just going from 3 minutes to 5 minutes, so that should be a negligible change for him.)

Notice that I say “different kind of support.” He will still need support from other people – we all need that in our lives.

One reason for this is because of his maturity level, especially in terms of emotional and social functioning. Another is that he is not at the point where he can always identify when he needs additional help or ask for it if he does realize it. That skill is one of the most important ones I can think of for him to learn, actually.

As I am writing this, I am thinking that another thing I need to emphasize more with him is that everyone needs help and support from other people, to varying degrees based on what is happening in their lives. Pointing out to Michael when others are asking for help or making mistakes or struggling to learn a new skill helps him see that everyone has difficulties at times and that it is actually a sign of maturity to know when to ask for help.

I think a lot of his “self-regulation” issues come down to this perception that he should be able to do everything right and win all the time and understand everything immediately, and that when things don’t go the way he expected, he has trouble identifying what is happening and then either communicating it to someone or figuring out what to do about it.

So (and pardon me as I use my writing to think through the issue), perhaps my focus should be more on helping him to notice and understand what is going on around him so that he can engage in more communication and interactions that are meaningful for him.

This may sound sort of touchy-feely, so let me say that I definitely think it is critical to provide clear instruction on “expected behaviors” and related topics, and that using tangible reinforcements for motivation on non-preferred tasks meets his needs at the moment. And these strategies are incredibly useful to get through the school day, and for structured events in the home and community.

Sometimes I wonder if I am being hypocritical by advocating for such a high level of support at school, while tending towards a more natural interaction at home. But ultimately I don’t think I am, for several reasons:
1. School is by its very nature a more structured environment, with many people who all need to work together in a safe and responsible manner to accomplish specific goals.
2. There is less time and opportunity to provide the in-depth explanations and time to process situations within the constraints of the school day.
3. A teacher with a class full of students cannot possibly attend to all of the signals that Michael may not be paying full attention or understanding the dynamics of what is going on or even that something is upsetting to him. (His current teacher is by far the best at this that I have seen, but it’s a completely different situation than him being with just me or with a therapist one-on-one.)

Recognizing these things has helped me gain a better perspective for myself on what I advocate for school supports. At home, I may not need to provide such a high level of reinforcement*, simply because I am able to focus more intently on his needs at that moment, whether it be adjusting the environment or having an in-depth conversation about perception versus reality.

At school or in a more structured community setting, he needs the higher level of reinforcement to motivate him to accept what is happening around him or what he is being asked to do as necessary, even if he doesn’t like or understand it completely. And learning that different situations and environments have different rules and expectations is a good thing too.

Edited to add: *Re-reading this, I think I should say I don’t need to provide as much tangible reinforcement such as physical rewards or a token economy, but can rely more on social and emotional reinforcers.

Sunday Best is a collection of my favorite links from blogs I have read in the past week (or sometimes a bit more if I get behind!) Posts may range from thought-provoking or challenging to instructive or informational, with a dose of fun and light-heartedness thrown in occasionally for good measure.

Advocating 101: How to Write a Letter – Caitlin at Welcome to Normal shares some amazing tips on how to write an effective letter. As she says, “A masterfully crafted letter can be an incredibly powerful weapon in an advocate’s arsenal.” This post is a must read for anyone who wants to improve their advocacy skills.

Helping Teachers to Understand Your Aspergers Child at My Aspergers Child – This post addresses the question of what to do when your child has received a diagnosis but the school is still reluctant to provide an Evaluation/IEP/Special Education. It includes a template and an example letter that you can modify to officially request help from the school. This is a perfect follow-up to the first post I listed.
(This site was not coming up for a few days. If for some reason you can’t get to the link, I do have the article in my email and can forward it to anyone who would like it.)

Another great tool for advocates is this PDF entitled Anatomy of a Behavior Plan put together by Community Health Connections. The document walks you through the process of assessing behavior and putting together a plan.

I realize these are a bit heavy on the advocacy side today. I’ve got IEPs on the brain as we have a team meeting tomorrow to discuss a number of issues regarding implementation of the existing IEP, as well as possible modifications and additions to it. All positive thoughts and prayers are appreciated!

Please feel free to share your favorites from the week in the comments – I’ll be sure to check them out!

Besides revisiting the behavior plan and the level of positive reinforcement being provided, the other thing the IEP team did in response to Michael’s aggressive behavior at school was to add a safe crisis plan.

We had had a safe crisis meeting earlier in the school year when the school secretary had (inappropriately) gotten involved and physically moved Michael from the hallway into a classroom, but all we did at that point was clarify for everyone in the building who to contact if the adult in charge of Michael felt they needed assistance with him (i.e. NOT the secretary!).

Now we had started seeing some out of control behavior, with Michael jumping straight from a calm state to yelling and screaming at people, and then a variety of aggressive behaviors, including hitting, kicking and throwing things such as his shoes and socks, chairs and even a trashcan. So the team met to create a safe crisis plan.

The way it was explained to me, the behavior plan tells the adults what to do so the child will (hopefully) not have a meltdown, and the safe crisis plan tells the adults what to do so THEY don’t have a meltdown! Our plan does not include any form of restraint; in fact, the purpose of the plan is to give everyone the information they need on what to do so that restraint will not be needed.

Our Safe Crisis Plan
The basics of the plan are pretty simple – if Michael is hitting, kicking or throwing things at anyone, the teacher will physically block the behavior if possible and will clear the other students from the room.

Next, a second adult will be called to take charge of Michael. Once he is calm enough to leave the room himself, he will go to a separate room with the adult. We chose the speech room so we would have a consistent location; the SLP is only in the building two days per week and does a lot of her work in the various classrooms, so it is usually available.

Then, once Michael has left the room, the other students can return and continue with their lessons. Michael will stay in the speech room until he is completely calm and ready to return to class If he is unable to calm down after 30 minutes, they will call me to come and get him.

Of course, we are all very focused on lots and lots of positive reinforcement of desired behaviors and on intervening as soon as we see Michael start to become upset to avoid any of this, but it is good to have it in place so everyone knows exactly what to do if there is a problem and to lessen the possibility of anyone getting hurt.

NOTE: I thought I had posted this last night, but I just realized it was still in draft form. We actually used this plan today, as he had an incident that turned into a major meltdown and I had to come and get him from school. I’m still trying to process the details and figure out where to go from here as far as he is concerned, but I am thankful at least for a good team that is working so well together.

Nothing in my brain is really connected right now, so this post may not make much sense. But I wanted to at least keep people up to date with the main stuff.

First of all, I’m so irritated with myself that I haven’t downloaded the pictures from Trick or Treat or the school Halloween party. Michael ended up going as a bottle of mustard, which was so cute, especially since yellow is his favorite color.

I also keep forgetting to take the camera with me to swim class, but he has made so much progress in the few weeks since he started. He is willing to try everything in the water and actually like floating on his back in the T-position the best (which freaked him out at the beginning). He is putting his face in and doing scoops and “diving for rings” in the 2 foot area. The only thing he is scared to try is jumping in the pool. The instructor has told him that he has to do it next week, and that he will help him. I am talking to him about it every day to encourage him about how good he will feel once he has done it.

Today was a whirlwind. There was no school today, so Bob took off work to stay home with Michael. I went into work early, and then we all met at the psychologist’s office to share the new school behavior plan with her and talk about how things are going in the playgroup and at home. Then I went back to work until it was time to go to school for the Parent-Teacher conference.

I had a great meeting with his teacher and case manager (the learning support teacher). His academics are great, and they are seeing a decrease in the yelling and an increase in him recognizing when he needs a break. We have what I think is a great behavior plan that is starting tomorrow, and we will also have a new TSS starting tomorrow.

When I got home from the conference, the BSC and the new TSS were at the house. It was great to meet her, and we are all very optimistic about how this will work out. Now we are getting ready to go out to a new support group meeting for Asperger’s/PDD-NOS/HFA. I’m not sure what it will be like, but I thought it was worth checking out.

So a very busy day – but I feel good about everything. I don’t really have a to do list put together right now, so I need to go through my pile of stuff and sort out what’s left to take care of. That’s my plan for tomorrow after work, and that’s about as far ahead as I can think right now!

This post was written for Steady Mom’s 30-Minute Blog Challenge. To see some actual to do lists by people who are really getting things done, check out Crazy Adventures in Parenting’s To-Do Tuesday.

Well, I didn’t get much checked off my list this last week – too many other things kept popping up that needed to be done. After going round and round with the DAN! doctor’s office, I have decided to get copies of all the test results we haven’t met to review yet and then cancel the follow-up appointment. It is just not worth the hassles I am dealing with every single time I need insurance paperwork done properly or even to talk to someone at the office. The office manager has been very helpful, but even she can’t make up for the other frustrations I have experienced.

Now I am trying to figure out what route we are going to go. I do have Michael taking a small amount of Essential Fatty Acids as well as Melatonin at bedtime and Liquid Zeolite, which we are trying out with a few other local parents. We are going to be tracking the zeolite on a weekly basis, so I can’t add the other supplements I was holding until the organic acid test was sent in (which is now on hold anyway!).

We have a behavior plan meeting Thursday morning with the school – very excited about that – and our wraparound agency is working on getting a new TSS b/c the current one is just not up to par with what we need.

With everything going on, I think reorganizing my to do list into more of a schedule would make sense and help me to feel less like I am trying to do too many things at once. Hopefully, this will move me closer to a routine like the one that was working so well last summer.

This is where the To-Do List normally goes, but I just still haven’t really figured out how to organize my schedule. So I guess this is really just a Biomed Update!

The behavior plan meeting went well. I’ll post more about that soon. Right now, we’re super excited about going to see They Might Be Giants on Saturday for a kids’ show – although it is supposed to be yucky and rainy. My sister-in-law and her family are planning to come. Two of their girls haven’t been feeling well, so we are hoping they will be better by the weekend.

For more To-Do Tuesday, visit Crazy Adventures in Parenting.

I have alluded to an incident that occurred at my son’s school, but haven’t gone into detail because I have been working on getting it resolved and have just not had the emotional energy to write about it. There have been several outbursts which could have been handled better by the teacher and/or TSS*, but they are both learning more about how to work with Michael as time goes on, and I feel that both of them want this year to be very successful for him.

The thing that is the biggest issue is that the school secretary got involved in one of the situations and ended up carrying him into a room. Because this qualifies as a restraint, it actually has to be reported to the department of education. Also, an IEP meeting is supposed to be held within 10 school days unless I waive the meeting in writing.

The meeting was supposed to be Thursday (Friday was 10 days), but now it has been moved to Tuesday and allotted 15-20 minutes since we are evidently only talking about the restraint by the secretary. I’m going to email them back and say that we will need another meeting to talk about the rest of the issues that have arisen, and also that whatever we decide about how escalated situations arise needs to be added to the IEP in writing. I’m sure they’ll just love me, but I really don’t care anymore about that.

For anyone who is interested in the details, I’m copying the letter I sent to the Special Ed Supervisor after speaking with her the day after the incident. I’ll keep you posted on how it goes.

Thank you for calling on Friday; I appreciated the opportunity to speak with you regarding the incident that occurred at my son’s school on Thursday afternoon and, at your request, am emailing you my understanding of what happened. I am also copying the IEP team to keep everyone in the loop as we move forward.

The note in Michael’s daily communication folder on Thursday mentioned that the secretary had brought him into the music classroom when he didn’t want to go in, but wasn’t clear on exactly what happened, so I went in on Friday morning to discuss the situation with the school.

I have not spoken to everyone involved in this situation, but I did hear about the physical intervention directly from the school secretary, Mrs. X. Evidently Michael had become quite upset during music class when a movement activity was introduced (this is a known trigger for him). Because a quiet space has not yet been identified in that classroom, the TSS took him out in the hallway to calm down, per the “Engine Level” chart we have in his IEP.

For reasons I do not know, Michael went from the hallway to his first grade classroom to “pull a card” (this is related to the school behavior plan; we are currently in the middle of an FBA to develop a Positive Behavior Plan for Michael). While he was there, the teacher talked to him about returning to music. The teacher reported to me that he said, “I would rather die than go back to music.” At some point, she called down to the office for the principal to come and talk to him. He was not available, and eventually Michael agreed to walk back to class with the TSS. Upon arriving at the music classroom, he became upset again and refused to go back in.

Since the principal was not available, the school secretary had come upstairs to assist with the situation and told me that Michael was lying down in front of the door to the music room. She stated that she told him he couldn’t stay there because it wasn’t safe and that he had to go into the music room. I was not told of him being given the option of returning to the quiet space, or any other options. She then picked him up under the arms and carried him into the room.

I understand that she was acting on her best instincts, but I feel this crossed the line both physically and emotionally. I need to feel that my son is safe when he comes to school each day, and it scares me that a situation can get so far out of control on just the fourth day of school and with a seven-year old child who is simply trying to communicate his distress in a way that will be heard by those responsible for him.

We need to respond to his behavior as a form of communication and to follow the plan agreed on in the IEP to handle the situation instead of escalating it by our actions. Then we can go back later to look at what we need to change to avoid his being triggered the next time he is in a similar situation.

I have followed up by phone with the principal, Mr. Y, who has apologized for the incident and assures me that there will be no further involuntary physical intervention with Michael. His case manager, Mrs. Z, and I will also be working with Ms. A, his autism consultant, to address the various other issues at work here with the staff and the IEP.

In speaking with Ms. A, she had said to me that this should be reported to the state as an incident of restraint. Mr. Y [the principal, in case you lost track of my assigned letters] feels that it did not go that far. I am not an expert in this area, and my primary concern is that we all acknowledge the inappropriateness of physically moving him and agree that any intervention of that sort would only take place in the face of actual immediate danger.

Again, I appreciate your time and concern for this situation. I am confident that as a team we can make the necessary adjustments to support Michael appropriately at [this school].

Any advice on how to keep my emotions on an even keel when they are changing daily (sometimes hourly) as I try to figure out how to deal with all the different issues this year has brought up so far is welcomed. It’s hard to really get my thoughts together because I get so upset when I start thinking about it all.

*TSS stands for Therapeutic Support Staff, and this is a person who provides behavioral support. They are not employed by school but are funded through Medical Assistance and directed by a Behavioral Specialist Consultant. The BSC does go to the school and will also be helping with this situation, but I didn’t mention her specifically in the letter.

Do you ever walk around with the feeling that things are piled up precariously around you and are going to fall over on you like an avalanche at any moment?  I think it is times like these where I don’t have a lot on my schedule and immediate to do list that all the looming fears come forward to haunt me.

The weight of all these worries seems to get heavier each day, even as my strength slowly returns to my body.  Now that Michael’s TSS has all but disappeared, the daily notes coming home from school are uniformly positive (Good day!, Great day!!, Another awesome day!!).  In my world, though, strings of good days are always suspicious, if only because they invite you to relax and feel like everything’s going to be okay indefinitely.  On the other hand, this could be the school’s way of saying they don’t really like having a TSS there but are not going to pay for a paraprofessional, that they don’t want to be bothered to implement the SDI’s we have on the IEP and appreciate not having someone from outside observing their actions, or it could be a campaign intended to avoid having to write a behavioral plan for the next school year.  In fact, I can see them congratulating him on achieving his goals and blandly stating that they just can’t imagine what other goals to work on.

Now the panic starts to descend fully.  With no behavior plan or, God forbid, IEP, we could start to slip on the supports and modifications he needs, we could start expecting him to respond like all the other kids and “act his age”, we could see him sent to the principal’s office for behavior infractions that are a direct result of his gaps in executive functioning.  I truly am happy that he is so smart and so verbal, but these sorts of fears that creep in terrify me to no end.

I try to get a grip and tell myself this is good timing.  It’s only mid-February, so I have a few weeks to get my thoughts together and make notes about what should be on there for next year–both what has worked well this year and what new skills or expectations will come with being in school all day for first grade.  If I could just pull myself together enough to put a sentence together without dissolving into tears, maybe I could actually make some progress on this.

And most of all, I need to remember to trust God to ultimately be our protector and helper.  He is our source, not the school or the teachers.