The events of the last two days have brought up questions in my mind about what are reasonable expectations regarding the implementation of an IEP, especially at the start of a school year. (Keep in mind that the effective date of the IEP was 4/29/10.)
- Is it reasonable for me to expect that the staff would be familiar with the IEP and especially the behavior plan?
- Is it reasonable for me to expect that all the supports identified in the IEP would be ready to go on the first day of school?
- Is it reasonable for me to expect that I would be informed if there would be things that aren’t implemented right away and given a time frame for when they would be started?
- Is it reasonable for me to be frustrated that, despite the fact that we had a meeting during which we discussed all of these expectations, there were staff who weren’t familiar with the plan and there were also supports that weren’t ready and hadn’t been identified as needing more time to implement?
- Is it reasonable for me to be annoyed when some of the team members’ response is, “Well, the first week of school is tough.”?
I am really curious as to what others’ experiences with this have been and decided to “poll the audience,” so to speak. I’d love if you would take the poll (click here to take the poll if you are viewing this in a feed reader). Or you can leave a comment with your thoughts, or do both!
Note: Technically, this is three separate one-question polls, since I couldn’t figure out a survey option that would actually be in the post instead of as a separate window. Anyway, I look forward to seeing what everybody thinks about the subject!
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Please feel free to share any additional comments or other answers that you think should have been there!
When I originally started writing this post, my first sentence read, “Every year I get a little bit better at this transition stuff, both in terms of what Michael needs and what I need.”
After the day we had today, I think that is true in terms of better knowing what I need but not so true in terms of really knowing what Michael needs.
Kindergarten
When Michael was entering kindergarten, we participated in all the events the school had for incoming students. They actually did a really nice job with it, and I think Michael handled the transition as well as could be expected. I, on the other hand, was a nervous wreck, especially as the first week went by and I still hadn’t seen the daily schedules or communication book that were promised in the IEP.
I eventually got up my nerve and contacted the school team and found out where we were with both of those items and was happy to see them come home during the second week of school. The teacher didn’t ever acknowledge Michael’s disability, but our behavioral support person and the rest of the team seemed to just work around her and he did okay (she retired at the end of that year after 36 years of teaching).
First Grade
To prepare for the transition to first grade, we had Michael visit one of the classrooms in the spring of his kindergarten year. We then planned a visit for the week before school started to meet the teacher and see his classroom and his desk. It was a short visit but did help Michael know what to expect for the first day of school.
I was still nervous, especially since I didn’t get much of a feel for the teacher or know whether the agreed-upon supports would be ready for the beginning of the year. The teacher turned out to be fabulous, despite the stress of waiting for the team to finalize Michael’s behavior plan and dealing with a behavioral support person who really wasn’t suited for the job.
Last year was a long series of ups and downs, both as a team and for Michael, but we ended the year on a good note and with a solid IEP for second grade.
Second Grade
In the spring of first grade, the entire class took a trip around the corner to see the second grade classrooms and meet the teachers. This was a nice way for Michael to learn about what to expect the following year without being singled out as difference (something he is becoming more and more sensitive about).
Just like last year, we scheduled a time for Michael to visit his classroom and meet the teacher again the week before school started. That visit took place last Wednesday and went very well. He had a ton of questions about everything, and I was happy that the sub who will be teaching while Mrs. G. is on maternity leave was there as well.
In addition to the classroom visit for Michael, I also requested a meeting with the case manager, second grade teacher, and Michael’s behavior specialist consultant. That meeting, which also included the other second grade teacher and the principal, took place a couple of weeks ago and was definitely the missing piece of the puzzle for my own anxiety about “back to school.”
We spent about an hour together answering the teachers’ questions about Michael and the IEP, especially regarding his behavior plan and safe crisis plan. I was able to share what we have been working on this summer and discuss how we could all work together for the best start to the school year.
Reality
Today was Michael’s first day of second grade. I arrived to pick him to find that he had been upset and crying since about 2pm and had not participated in art or anything that took place after story time. From what I can tell, he spent most of the last hour and forty-five minutes in his quiet spot, and at some point threw his shoes and at another point walked past the teacher and swung at her, lightly hitting her stomach (did you notice the part where she is going on maternity leave very soon?).
I waited in the hall for the other students to be dismissed and could hear that Michael was still upset. He did eventually calm down enough to get his things together and come out to me in the hallway, at which point he broke down in tears again. Once he had calmed down a little bit, I asked him if he would be able to apologize to the teacher for his actions but he was still too upset.
I’m still piecing the story together from what Michael’s been able to tell me and a conversation with his behavior support person. Although I am frustrated, I am not as overwhelmed as I would have been in the past and I can take some action without totally losing my cool as I would have in the past.
I have been collecting a bunch of bookmarked pages and emails with all sorts of information that I thought might be useful but didn’t have time to go through right then. I am finally getting to this project and wanted to share with you the fruits of my labors. 
No-Food Birthday Cakes at American Partnership for Eosinophillic Disorders
I was doing some reading on eosinophillic esophagitis (for me, not my son), and found this great article at about how to make birthday cakes fun for a kiddo who can’t or won’t eat cake.
There are some very clever ideas here, and I’m sure something will jump start your creativity for the next celebration. Luckily, I have a few months to think about this one, but I definitely want to do it for Michael’s next birthday party.
What to Ask of An Occupational Therapist at The Thinking Person’s Guide to Autism
Wow! This guest post by Dr. Boucher from TherExtras blew me away – how I wish I had something like this when I was getting started!
No matter, I’m sure I will use it many times in the future and adapt it to any professional I am seeing for my son. And I’m also thankful to have been introduced to another great blog with tons of helpful information.
Autism Risk & Safety Management
This is the site of Dennis Debbaudt, a leading advocate for autism training for first responders. With the increase in encounters between law enforcement and people with autism, this is a crucial area of need, and this site has a lot of information about keeping your child safe and reaching out to the community.
I know several members of our Autism Society chapter take gift baskets to the police stations locally on their Memorial Day (where they remember fallen officers) and also ask for the opportunity to speak with them about autism. It has always been very well received by the officers.
National Parks FREE Access Pass
Did you know that a person with a permanent disability can get a free lifetime pass that is good at federal recreation sites? It is available to people who are US citizens or permanent residents and would also cover the person’s caregivers. The site has full details of the eligibility requirements and how it works, although you do have to obtain it in person so they can verify residency and disability documents.
Now that Michael is interested in traveling to different places, I am definitely going to get one of these. It will be a big help to the vacation budget!
Usually, when you hear a horror story regarding a child with autism and the dentist, it relates to their sensory issues and other difficulties that make it a traumatic experience for everyone involved. In our case, the pain and suffering centers on my having to deal with the insurance company.
Let me preface this by saying that we choose to have an HMO for our dental insurance rather than the PPO option. Overall, it is the better choice for our family, but it can be a real pain when trying to obtain appropriate care for our son.
Let me also say that I realize this is not really a horror story because it eventually gets resolved and that I know many people go through far worse in their dealings with insurance. I just think I will feel better once I get it off my chest, so to speak.
Our Dental Saga
February 3rd – Take Michael to new primary dentist, watch hygienist attempt to clean his teeth and dentist attempt to examine them. Once his teeth have been half cleaned and one cavity has been identified, obtain the referral to the pediatric dentist.
February 17th – Take Michael to pediatric dentist, who has been seeing him for several years and cleans his teeth himself with a regular toothbrush. Listen as dentist tells me he actually has two cavities and that he would like to fill and seal them, using nitrous oxide to help him be calm during the procedure.
February 25th – Receive predetermination notice from insurance company that everything except the anesthesia would be covered. Notice states that it is valid through 2/24/11.
March 10th – Michael turns 8 years old. (This become important later.)
April 5th – Take Michael to have the work done. The dentist is able to complete everything with the only complaints from Michael being that it took to long to “get his teeth painted.”
April 8th – Receive denial from insurance company stating that claim was sent in without referral form. (This happens every time, and every time the dentist insists they sent the form, so I don’t know who is telling the truth.)
June 10th – Receive another denial from insurance company stating that claim was sent in a second time without the referral form.
June 14th – Speak to the insurance company and am told that they can process the claim using the referral form that is attached to the predetermination of benefits for this service.
June 24th – Receive letter from insurance company stating that because Michael was 8 years old when the services were provided, our coverage no longer allows him to go to a pediatric dentist unless he has special needs that are documented by from his physician.
June 28th – Call the insurance company to find out exactly what the doctor needs to send and where it should be sent and am told by the customer service rep that no matter what I send in, nothing will be covered because our policy does not allow children 8 years old to go to a pediatric dentist, even with special needs.
After being put on hold multiple times and condescended to for not “understanding” his explanation of our benefits, am told that a supervisor is not available and he can request a callback for the next day. Am also told that the supervisors will probably ask him to handle it and won’t actually call back themselves. Tell him not to bother as I will call first thing in the morning.
June 29th – Call the insurance company again and ask to be put through to a supervisor immediately. Speak to a very nice and professional woman who explains exactly what I need from the pediatrician and where it should be sent. (She also expresses her shock at the way the call was handled the previous evening and promises to pull the call so she can review it with the representative.)
July 9th – Receive letter from insurance company that they are still working on the claim. (Assume this means they got the note from the doctor.)
July 15th – Receive EOB showing that all dental work has been paid for with the exception of the anesthesia. WOO HOO! Call to confirm that it is okay to schedule his next cleaning and am told I do not need another letter from the doctor.
Today – Call the primary dentist to get a referral to the pediatric dentist and pray that I’m not just starting the cycle all over again. Ugh!!
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.
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.
