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

Compliments of Autism Asperger’s Digest March/April 2011 issue

Excerpted from the article, “Going Off to Camp: Information and Encouragement for Parents” that appears in the March/April 2011 issue of Autism Asperger’s Digest magazine. Reprinted with permission. The Autism Asperger’s Digest is offering a subscription special during April, to celebrate National Autism Awareness Month. Details follow.

Spring has yet to arrive, so why are we talking about summer camp for kids with ASD? Because you’ll need plenty of time to find a camp and then prepare your child for this important experience. But also because camps are already accepting applications and time is running out.

Whether you’ve made the decision to send your child with autism or Asperger’s to summer camp, or you’re still unsure – possibly torn between pros, cons, or where to begin – this article will help you through the process. Four camp directors shared their expertise, several parents offered advice from their camp experience, and all that information is combined here to give you tips and information to ensure a successful camp experience.

Before You Begin…

Consider these tips from the parents and camp directors to get you started:

• Know what you want; determine your goals. Many parents use summer camp primarily as an opportunity for their child to be away from home, socialize and build self-confidence. Others have a more specific goal, such as a therapeutic environment, academics, or a camp specializing in sports, arts, computers and other interests.
• Perform an honest assessment. Decide whether you and your child are ready for camp. This step is just as – and sometimes more – difficult for parents.
• Gather information. If you’re having a hard time making a decision, finish reading this article, target a few camps you like and talk to the camp directors. This will give you a sense about whether that camp is a good fit and the directors will help you work through concerns to make a decision.
• Prepare a list of questions. Don’t count on remembering everything you want to ask the camp director. Make a very thorough list covering every concern.

What to Look For in a Camp

You can count on this advice because it comes straight from experienced professionals managing camps for kids on the spectrum.

Sylvia Van Meerton (Dragonfly Forest), Linda Tatsapaugh (Talisman Camps), Debbie Sasson (Camp Akeela), and Elsa Berndt (Camp Lakey Gap) generously offered some great information about what to look for in a summer camp. The parents added 100% agreement with these recommendations:

1. Size of camp. Most camps specializing in ASD have fewer campers at each session, however you may also want to ask about size as it relates to how many campers bunk together or the number of kids in group activities.
2. Ratio of campers to counselors. Special needs camps typically have ratios of 1:1 to 1:4 compared to regular camps that have 1:20+. Is there enough staff to allow individual attention to campers whenever necessary.
3. Accreditation. Is the camp accredited by the American Camp Association? This is a good indicator of overall quality.
4. References. Will they put you in touch with another parent whose spectrum child has attended the camp?
5. Application form. This should be extensive so parents provide comprehensive information. This allows staff to get to know the family and the child – what causes meltdowns, fears, when to give cues or warnings. It also builds parents’ confidence in the camp’s ability to manage their child.
6. Staff training and background. How much autism-specific training is provided? By whom? This is a deal breaker because you must be confident that camp counselors understand autism and how to manage each child’s needs. At Camp Lakey Gap, counselors receive two weeks of training provided by experts from TEACCH and the Autism Society of America, and they interact with local special needs kids for experience.
7. Communication. Are phone calls from parents welcome? Do staff members regularly call home? Can parents talk to their child? Some camps find that conversations between campers and parents seldom help homesickness; other camps leave it to the parents’ discretion. This is another reason why it’s important for parents to trust the camp staff. Also ask if they do anything to facilitate ongoing communication between campers throughout the year. Camp Akeela fosters a sense of community through newsletters containing updates about individual campers all year long.
8. Homesickness. How do they deal with homesickness? At Talisman Camps, they encourage the children to write home, expressing how homesick they are. One mother said she was worried when she received a letter saying, “I hate camp. I’m 100% homesick.” But with each subsequent letter, her child’s rating of how homesick he was improved, creating a great visual tool for both parents and campers to see how well they were adjusting.
9. Medical personnel. Who oversees medication management? Do they have a nurse available 24/7? What are their procedures in case of an emergency?
10. Autism support. What specific supports do they provide? For example, at Dragonfly Forest, counselors use a whiteboard at each activity to prepare the kids by writing down the rules, what will happen, and what to say if they need a break. The counselors also carry a backpack with schedules, timers, paper/pen and a common high interest and/or soothing activity.
11. Behavior management. How do they manage difficult behaviors? What happens when a child has a meltdown? Ask how they’ll deal with specific challenges faced by your child. When do they call parents?
12. Daily schedule. What is a typical daily plan? Is it tailored for the child’s interests and needs? Is it flexible? Look for a structure that allows children to do activities at their own pace rather than being forced to keep up with the group.
13. Breaks and downtime. How do they allow for breaks? Are they built into the schedule? Do they have a quiet place or sensory room? Are procedures in place to allow a child to opt-out of an activity when needed? Do they teach campers how to express the need to opt-out?
14. Activities. Does the camp offer something your child will be interested in? Are there enough choices and different types of activities? In addition to summer activities like swimming and hiking, are there other less typical choices like cooking or wood shop?
15. Special diets. Can the kitchen accommodate your child’s special dietary needs? Who will monitor the child’s diet if he can’t/doesn’t himself?
16. Overall environment. This includes the physical and philosophical environment. Does the camp fit your child’s unique needs? What is their overall approach for dealing with autism?

Note: The article also includes sections on “How to Prepare for Camp” and “Anticipate the Unexpected.” Three additional strategy-packed articles are available to AADigest subscribers, in the Read More Online section of the website:

1. Decisions! Decisions! Questions to Guide You in Making a Camp Choice.
   Many pieces of information must be collected and considered when you’re thinking about sending your child with autism/Asperger’s to camp. Let this printable list guide the process and help keep you organized!
2. Stumbling Blocks: Special Considerations for Special Needs Campers
   Our Decisions! Decisions! list is a great cheat-sheet to print out and use as a guide. But some special considerations are likely to present a bigger stumbling block than others. We discuss distance to camp, dietary accommodations, neurotypical versus a special needs camp (with tips for each), and financial considerations (includes ideas for making camp happen no matter what the family’s financial status).
3. Words of Wisdom: From Parents and a Sibling About the Camp Experience

Copyright © Autism Asperger’s Digest. 2011. All Rights Reserved.
Distribution via print or electronic means prohibited without written permission of publisher.

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A bit of background:  STAP stands for Summer Therapeutic Activities Program, meets Monday-Friday and is funded through Medical Assistance.  Playgroup is Thursday afternoons, is run by the Intermediate Unit (IU) and funded through the school district.  Same transportation company has both contracts, one through the county and the other through the school district.

1.  Wednesday 8:55 am – call STAP to find out if van driver has been there, since she hasn’t picked up the Little Guy and we have been sitting outside for half an hour (pickup time was scheduled for 8:35 am).  Also find out why they left voice mail message asking if he has any dietary restrictions after he was refusing to eat his lunch earlier this week (instead of them already knowing this information because it was discussed with the program director and noted in his intake paperwork, or even possibly from looking inside the backpack he brought with him to see the lunch I packed and backup note I sent!).

2.  Wednesday 9:05 am – call phone number given by driver and leaving message on her answering machine that I was taking the Little Guy to STAP since she hadn’t come yet and since I am supposed to be at work at 9:00 am.  Hoped she was alright and that there wasn’t an accident or anything.

3.  Wednesday 9:10 am – call boss to let him know that I am running late and will be at work as soon as possible.

4.  Wednesday 9:20 am – call transportation company and leave message that he wasn’t picked up, despite the van driver telling the STAP personnel (when she dropped the other kids off at 9:10 am) that she came by our house and we weren’t there.

5.  Wednesday 12:30 pm – call transportation company to follow up on earlier message and learn that message was not passed on to appropriate person when she came in.  Assured that situation would be looked into and he would be picked up tomorrow.

6.  Thursday 3:45 pm – call the IU and leave message for preschool secretary to double check that they were supposed to start back this week after the 4-week break, since he was not picked up for playgroup this afternoon.

7.  Thursday 3:50 pm – call playgroup location and leave message for teacher to let him know why the Little Guy was not in attendance today.

8.  Thursday 3:55 pm – call the IU again and leave message in teacher’s voice mail since he is only on location on Thursdays and might not otherwise get the message until next week.

9.  Thursday 4:10 pm – call transportation company after hearing back from IU that they were definitely scheduled for today.  Ask about situation from yesterday since I hadn’t heard back on that and learn that driver must have come very early and just not waited; apparently 8:25 am is our new pickup time, so we need to be ready by 8:15 am.  Also told that she doesn’t know why he wasn’t picked up for playgroup and assured that he will be picked up for it next week.

10.  Thursday 4:25 pm – call STAP director to make sure she knows that he will be picked up for playgroup next week and am told that the transportation company is now questioning it because they aren’t sure who is paying for it.  Let her know that school district should pay for it just like they have been since playgroup started last August.

Phew!  It finally looks like everything is resolved with the summer schedule.  One more day and then the weekend – TGIF!!

Now, you didn’t really think I would get off the hook that easily, did you??

Friday 1:30 pm – call Medical Assistance insurance company to get referral for pediatric dentist who works with special needs children since the Little Guy has a checkup scheduled for next week.  Am told after talking to four different people over the course of about 40 minutes that they will no longer give this referral, even though this is the only dentist he has ever allowed near him.  Learn that since they now have a pediatric dentist as a participating provider, he must go to her even though she is farther away and may or may not be able to get near him to actually examine his teeth and even though they might have to pay the entire bill if she is not participating with our primary insurance rather than just a part or even possibly nothing at all.

As both our primary care dentist and the new referral dentist are closed, and the insurance person at the dentist he actually sees is gone for the day, I will have to wait until Monday to start the next round of phone calls.  Have a great weekend everybody!

Remember how I said on April 26th that all we needed for the Little Guy’s summer program application was the sign off from the psychologist?

Yeah, well, it’s still not done, and it’s been almost 2 weeks! My BSC emailed everything over to her so she had it on Monday the 28th (Thursday the 24th was the earliest day it could be sent in). I followed up that Friday to make sure everything was okay and learned that nothing had been done. I called and emailed the psychologist, who was out that day and received an email back on Monday that she would try to have it done this week. The insurance company (Medical Assistance Mental Health HMO) said I can file a complaint but there’s nothing we can do to make her complete it faster, and that if it is done this week, they may still be able to get him in somewhere, even if it’s not our first choice – or our second or third.

I just called and left her a message basically begging for it to be done and for her to call me back. At this point, the most important thing is that he gets in, so I am just throwing myself on her mercy to help us out (and yes, I used those words in the voice mail). Being proactive and assertive and all is great, but I am desperate at this point. If she isn’t going to have it done this week, I am thinking I will file the complaint, and if not, then I probably will still file one once this is all resolved one way or the other. BTW, she still has not gotten the diagnosis correction into his file, and the original evaluation was in January.

So my biggest question is – does everyone with a special needs child deal with this crap all the time, or do I just make life too difficult for myself??

UPDATED later that same day: My BSC just called and she got the addendum from the psychologist, so the packet is going in the mail today and should be at the office by tomorrow for review. We are not in yet, but we are a big step closer!

I am feeling completely overwhelmed, especially at this time of year as so many programming decisions need to be made. We are still working on the transition to kindergarten, but for the moment my focus has shifted to behavioral health as we approach the start date to apply for a Summer Therapeutic Activities Program. This is our first year to participate in STAP, as it is more commonly known, and I hear it will be a mad dash once April 24th rolls around. Yikes, that’s next Thursday, and I am still not 100% sure the psychologist is on track for getting the addendum to his psych eval done as soon as possible.

I have spent the last two days talking to the STAP providers in our county, of which there are 8. Two are not specifically targeted towards autism, although one of those would take a child who is high-functioning. One of the ASD programs is for age 14-21, so that is out, and another hasn’t returned my call. So now I need to rank the 4 remaining programs, and that is one of the many reasons I am feeling overwhelmed right now.

Do I pick the one that is integrated with typical children but is mostly outdoors with swimming everyday and some team sports (both new to my child and likely very challenging)? It has a 4:1 ratio (4 campers to 1 staff) and has lots of field trips so requires a fairly high level of socialization and self-regulation, not easy to come by when you are faced with so many new experiences all at once. My gut instinct on this one is maybe next year, but I will say that the program director is very open and willing to work with each child on a case by case basis.

Two of the others are a 2:1 ratio and have once a week field trips with some incoming events as well (fire truck, etc) and incorporate some sort of curriculum involving individual learning in addition to social groups and arts/crafts (primarily used for following directions and fine motor skills, not for artistic ability). One of these is 2 doors from where I work, although that is not a big deal as transportation would be provided to and from home if he needs it. Both of these contacts were helpful but less enthusiastic in general; both are mailing me a brochure. They sound fine, but my instincts are this is too restricted an environment giving our intentions of a regular classroom for the fall.

The one that has really caught my attention has a 3:1 ratio, which might be a nice middle ground, and follows more of a preschool style curriculum in the morning, with circle time, different activities of 10-20 minutes each depending on the kids’ attention spans, includes sensory stimulation, arts/crafts and games with free play interspersed. After lunch, they usually go outside to local parks/playground (their office is in downtown Harrisburg right on the river so not sure exactly where they would be going for that).

This last one also has an afternoon program that he could go into when STAP is over, although the timing would be a bit tricky given our school district’s kindergarten schedule, and we may just decide to have him go to a half-day daycare instead. What is nice is that we can visit this program to get a feel for how they run things in general.

So, what I really have to do tomorrow is firm things up with the psychologist. If she is not able to be timely, I may have to have a whole new evaluation done at one of the other agencies, but then that opens another can of worms about the fall, which I can’t even think about right now. If the paperwork doesn’t get in quickly enough, which program is best will really be a moot point.

Thanks for letting me ramble – prayers and advice are welcome (and I promise to post another autism resource list tomorrow; I know I am behind on those). At least we don’t have anything other than church planned for this weekend, so we can all have a little time to decompress.