In So Many Words

Excerpt of this article by Marie Jackson reprinted with permission from the Autism Asperger’s Digest magazine, March/April 2008 issue. The Digest is offering a subscription special during April, to celebrate National Autism Awareness Month. Buy one year at $29.95 regular price and receive a second year for $15 – a 50% savings. Learn more at www.AutismDigest.com.

Images of long summer days filled with picnics, swimming, walks on the beach, and fun-filled family outings start filling everyone’s head this time of year, as winter recedes and the sun shines longer each day. There is something so comforting about knowing that soon the demands of school schedules, homework, meetings and therapies will cease and life will take on a different quality. Less hurried, less pressured. Soon it will be summer break.

Unfortunately for many students on the autism spectrum, summer is not, and perhaps should not, be mistaken as “time off.” While others may view it as rest – and downtime is certainly important for everyone – for children with autism, the summer break is an extended teaching and learning opportunity – one not to be overlooked by parents and IEP team members. Unfortunately, it often is.

What is ESY?
Extended School Year (ESY) is a legal term describing a period of services provided by the local education agency on days when regular school is not in session. ESY services are most commonly provided during the 8-12 week summer break, but ESY services can apply to weekends and other school holidays too – essentially any period where there is a break in a student’s Individualized Education Program (IEP).

What does this mean for students with special needs, and particularly, students with autism spectrum disorders (ASD)? The National Research Council’s report, Educating Children with Autism, clearly states in its opinion students with autism need a program with year round/12 month supports. Public schools providing an individualized program for a student with ASD, therefore, should once a year seriously consider whether or not ESY services are needed.

Actually, federal law mandates that this annual discussion take place within the IEP team. It falls on the shoulders of parents to initiate a request to discuss ESY services, and then come to the meeting educated and prepared with appropriate documentation as needed. Many IEP team members – administrators, teachers and service providers – are not educated on the legal aspects of ESY services, and can, in fact, present erroneous information. Some deny services outright without the team’s input. It’s up to parents to be well-informed and know their child’s rights.

Parents investigating ESY services for their child are usually met with strong school opposition: “We don’t offer a summer program.” “You must prove regression in your child for him to qualify.” “Our staff needs a break.” “We don’t employ a speech therapist/OT/PT over the summer.” These are all invalid and illegal reasons for denying ESY services. They may be understandable in light of budgetary and operational policies, but that doesn’t make them “right” in light of our children’s needs.

Administrators come to the ESY meeting wanting to reduce services and staff during the summer break. Teachers often need the break themselves. These logistical considerations are accompanied by others: having to define the word “appropriate” once again to fit a period of time not covered by the school year; struggling to find services outside the school district; creating a new schedule for a child dependent on consistency and predictability.

However, the bottom line is our students are afforded certain rights under federal education legislation, and ESY is one of them. Period. Schools who don’t “operate” during the summer are mandated to find outside services that will meet the ESY needs of the child. IDEA and court decisions may have determined ESY to be an important part of a student’s IEP, but for most of us there is a huge gap between this ideal and the reality most parents face. Change comes slowly in many districts.

So why even pursue ESY services? This is why: our goal (hopefully) is to provide students with ASD equal opportunity to learn academic, social and emotional skills that will allow them to become functioning and contributing members of society after graduation.

At minimum, we want the progress they made through the year to stay intact, so they come back to school able to use their newly acquired skills to continue learning in the next year. Students with ASD work very hard to make sense of their world. Their language/communication, social thinking and sensory challenges impede their learning. Their need for practice and repetition in order to learn skills and tasks that their neurotypical counterparts learn intuitively means they are already behind, even if they somehow “keep up” their grades from year to year.

For students with ASD, the extra instruction and learning time that ESY provides may be just the ticket for them to achieve a level of success that approaches or equals those of their typical peers.

Criteria for Determining ESY Services
Preparation for the ESY determination should begin early enough in the school year so that teachers can assemble the needed documentation, the meeting can occur, and if parents disagree with the school’s ruling, the parent has time to formally appeal the school’s decision before the summer break begins. Typically, schools hold ESY meetings beginning as early as March; May is late in the year to be discussing such matters.

Teachers should collect data pertaining to skills, behaviors, goals and objectives identified on the student’s IEP. Ideally, schools should measure a student’s functioning and progress at intervals during the year. Is there documented proof of progress or regression on IEP goals and objectives? Are there critical yet unmet IEP goals/objectives needed once school resumes in the fall? Are their emerging skills that if left unattended over the summer, will regress and need relearning in September?

All children regress to some point during the summer. The question here is whether the loss of skills over the summer will be so great that it will take the student with ASD a significant amount of time (more than the 4-6 weeks generally accepted for typical students) during the next school year to regain or recoup these skills.

ESY services and programming must be appropriate and individualized to the child. Decisions are required to be made based upon peer-reviewed research, formal and informal assessments by teachers and parents, and the child’s documented progress (or lack thereof) in meeting the goals specified in the IEP for the school year.

Parents should not come to the meeting with an adversarial nature; neither should the school district. A partnership is needed, with both parties willing to negotiate and arrive at an ESY program tailored to the needs of the child.

In the past, schools used (and many still use) a single criterion to determine the need for ESY services: regression/recoupment. However, federal and state court decisions and responses from the Office of Special Education Programs in Washington, DC have demonstrated that no single criteria should be used to determine ESY eligibility. As far back as 1998, Dr. Nissan Bar-Lev, Special Education Director in CESA-7 in Green Bay, WI, outlined 7 standards (based on court rulings) schools must use in making the ESY determination:

1. No Single Criterion can be used as the sole qualifying factor for ESY services.
2. Regression/Recoupment. Regression refers to loss of knowledge and skills; recoupment is the amount of time it takes to regain prior levels of functioning. This standard asks IEP team members to gauge, based on empirical and qualitative data, the impact the summer break will have on skills acquired and knowledge needed by the child when school resumes. For some students with ASD, without the repetition and structure of the regular learning program, coupled with the child’s limited ability to recoup skills, the child cannot meet basic educational requirements in the typical 180-day school year.
   The IEP team must not just look at documented regression; it must also present predictive data on the child’s recoupment ability. Based on his learning profile, how long will it take this child to regain skills learned during the previous school year? If recoupment is more than for typical students, ESY services may be warranted.
3. Emerging Skills. Is the child developing critical new skills that may greatly increase his ability to learn and be self-sufficient? How will a break in intervention deter these emerging skills?
4. Nature and Severity of the Child’s Disability. Autism is considered a severe disability, but it’s also a spectrum disorder. Each child is unique. Children with severe disabilities are more likely to be involved in ESY programs, since their regression/recoupment abilities may be significant.
5. Notice and Timing. ESY programs must be discussed – in a formal IEP meeting – with enough time for parents to exercise their children’s rights to dispute under the law. Simply giving parents a brochure on ESY does not meet legal obligations.
6. Content and Duration of ESY Services. ESY services must be individualized and appropriate for each student, and include not just education, but related services, therapy, transportation, etc.
7. Ability of Parents to Provide an Educational Structure at Home. Can parents reasonably replicate the needed education and program structure at home during the summer months? If the answer is no, ESY services may be warranted.

Each of these standards must be explored within the IEP team meeting before an ESY determination is made. It is important that discussions be based on objective data, rather than opinions, especially as it relates to regression/recoupment.

The regression/recoupment discussion can be very complicated for a student with ASD, since the disability is not homogeneous. There are documented cases of lost skills in children with ASD, making the regression/recoupment discussion a very important area of debate. In our son’s case for ESY, we provide independent assessments and other needed research to substantiate our opinion for specific ESY services. This leaves the team to discuss the other standards and how they apply to an ESY program.

From year to year a student’s skills will change. Therefore, ESY services can be different from year to year. A child with ASD might qualify one year and not another. “Different” doesn’t mean diminished, inappropriate, or non-existent. Different might mean adding a summer autism camp, working on social skills in a day camp setting, adding some fun activities such as gymnastics, swimming or other physical activities to maintain critical physical abilities.

ESY is a chance for both parents and schools to use education creatively and find services that fit the child in many different environments.

A Matter of Balance
The decision to advocate for ESY services is not an easy one for a parent to make. There’s a delicate balance between educating our children appropriately and making structured learning their “life work.” Everyone needs a break, including our kids. In our case, we look at how successful our son has been on his current IEP goals, his past history of regression on skills, his current needs and the peer reviewed research in the areas we are looking to support during the break.

There’s a certain level of parent and child stress that accompanies ESY services: a different program, different therapists, new (and perhaps exciting) opportunities. Exciting or not, it is a change for our son and any parent with a child on the spectrum can attest that change is one of the scariest words for our families. It comes back to balance, and how you define that with your child and your family.

Summer days should be used for building family memories – long walks on the beach, camping out, building friendships, tag games in the backyard followed by a firefly round-up! There was a time when I wondered if our family would ever be able to enjoy a summer vacation based upon these ideals. We saw summer time as an opportunity to work towards closing the gap between peers, strengthening emerging educational and social goals, and preventing the loss of hard earned new skills. But, it is also an opportunity to slow down and enjoy family time together. To let our kids be kids.

Being a strong, informed advocate for your child will go far in helping you and the child’s IEP team build a strong foundation of learning, whether that’s within the typical school schedule or via supplemental ESY services. Be informed, be strong, advocate as you need for your child’s best interests. But enjoy the lazy summer days with your entire family…and don’t forget to catch those fireflies!

BIO
Marie Jackson and her husband, Michiel, are the proud parents of Taylor (8) and Brandon (6). Brandon was diagnosed with autism in 2003. Since his diagnosis, Marie has become an active advocate for her family and community.

Copyright © Autism Asperger’s Digest. All Rights Reserved. www.AutismDigest.com

Sorry I haven’t written much this week. I have been preoccupied with a few things, including a major car repair that I need to get scheduled and a letter I need to write to Michael’s IEP case manager with several concerns regarding implementation of the existing items and discussion of some new ones.

I know what I want to say but I am stuck on how to say it in the best way to get results. Unfortunately, that can sometimes lead to procrastination, which in turn affects all the other things I need to get done as well. Quite the vicious circle!

It’s posts like these that give me the strength to gird my loins again and write the first draft of the letter.

The Inclusion Dance by Susan Etlinger

It’s official: I’m a bitch. By which I mean I’ve moved past that initial flush of optimism and teamwork and wanting everyone to feel good about themselves to disappointment, confrontation, detente, anger and now — inevitably — relentlessness.

F-Word Series: Fortitude by Mom-Blog

Your mental and emotional strength lies in your ability to STAY there, after your fit or break down, or Dove-choco-fest. To push away the bad thoughts and take your kids to the park or the beach or the birthday party or bowling. To, even a for a moment, damn the despair and find gratitude for this family of yours.

I’ve read a lot more great posts over the last couple of weeks, but frankly I am so tired (I’ve also been giving rides to someone, which has cut into my schedule as well) that I’m just going to share these two today.

I wanted to share with the results of the poll on reasonable expectations for how early in the school year IEP supports should be in place.

Of course, legally, we all know that supports should be in place as soon as the IEP goes into effect, based on the details listed for each one as to time and frequency. Realistically, however, our kids start back to school and it seems to be a crapshoot as to what supports are ready to go versus missing or not even started.

For my son, his current IEP has a number of items listed, but only about half of them were in place on Day 1 of school. I had been informed about only one that would not be ready on the first day, so I fully expected the rest of them to be there.

If I had known about the other items that were missing and told when they would be ready, we could have prepared for that and most likely shortened the amount of time that Michael was not participating over the first few days of school.

Anyway, here are the poll results:

[poll id="2" type="result"]
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Thanks to everyone who voted. Is it sad that it makes me feel better not to be the only one who wasn’t happy on the first day of school?

I did find a helpful article on Wrightslaw called 10 Tips for a Successful School Year and thought #6 was especially interesting:

6. Prepare to Deal with Potential Problems Early.
If your child is in general education classes, prepare for the teacher(s) who wants to see how your child “gets along” before making any changes in the way they run their classrooms.

Teachers often take this position because they want to give their students a fresh start. You may need to explain why your child may fail unless the teacher understands his/her unique needs and provides the necessary services, accommodations and supports.

I do want to say that my son’s team was EXTREMELY responsive when I brought my concerns to their attention the second time (the first time was at a meeting several days before school started).

By the second day, they had located or prepared most of the needed supports and even added a scheduled break that I had requested previously. The autism consultant also came on Day 3 and was very helpful in identifying what was still missing, although he did again have difficulty in the afternoons of the fourth and fifth day.

Since my original post about our frustrations with the beginning of school, I came across this incredibly insightful post by Caitlin Wray at Welcome to Normal, Population: 0 entitled Autism Backa**wards. I highly recommend you pop over and read it, as she says so well what I have been trying to put into words over the past week or so.

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!

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.

If you, like me, are already thinking ahead to back to school time and making the transition as smooth as possible, take a look at today’s Try This Tuesday.

Amazing Grace from Moms of Special Needs Children is sharing a student orientation checklist that you can include with your child’s IEP so that everyone on the team knows what is required of them to support your child right from the start.

What are your best tips for a good transition into the summer and then back into school again in the fall?

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.

How confident do you feel going into a meeting to write an Individualized Education Program (IEP)?

Today over at 5 Minutes for Special Needs, I am sharing some resources for learning more about the special education process and how you can advocate for your child.  Please stop by and leave a comment with your favorite books or websites on the topic.

Related Posts on Advocacy/IEPs:

• Autism Resources: IEPs and Advocacy
• IEP Goals and Related Services
• IEP Modifications and SDIs

Happy Friday, everyone!

I have seen quite a few other bloggers recently talking about IEP meetings and programming decisions and can empathize with all of them. It can be so hard to know what to ask for and what choices to make, especially when school is several months away in most cases. I am so, so thankful that we finally have all our decisions made and paperwork done for both the summer and the fall!

For those that have been following my (perhaps) overly obsessive struggle with the issue of kindergarten vs. first grade, the final answer is…

Although it is not quite 3 hours per day, and he will be pulled out for both Speech and OT each week, it just feels like the right choice for our Little Guy with where he is socially and emotionally. He will also be able to go to a social skills program after school for a couple of hours, through the behavioral health system, which will target those areas.

His STAP (Summer Therapeutic Activities Program) has also been finalized, and we got our first choice! This will be Monday-Friday from 9am-3pm for eight weeks. I believe he will really enjoy this, especially as they will go to different playgrounds almost every day.

One other good report – I spoke to our behavioral health provider and expressed my strong desire to keep the same TSS for both the summer and into the fall. I mentioned how difficult last year was with having 6 different TSS’s as well as 8 weeks without anyone, and I also expressed how both the school psychologist and speech therapist had asked specifically if she would be coming with him in the fall. The assistant coordinator assured me that she didn’t see any reason why that wouldn’t be possible, which is a relief compared to my previous experiences with them.

And did I mention that we only have 3 more weeks of paying for daycare and then we will be done with that part of our lives for the foreseeable future? (Yes, that is me doing the happy dance!)