A Quarterly Publication of the
Parent Network of the Capital Region
Spring 2010
girl in bike helmet

Transition to Summer

By: Elizabeth DeLibero, M.S.Ed., PNCR Director

The transition from the school year to summer can be tough for families, and may be particularly difficult for families who have children with disabilities.  Some children will be transitioning to summer programs or camps; others are transitioning to full time childcare while others are going to be at home (with lots of free time on their hands).  Whatever the case, your child will be transitioning from a predictable, structured routine to a less predictable and less structured routine.  The following are some suggestions to ease the transition and maintain your sanity!  Having spent many a first week of summer exasperated with my own children, I know the importance of being planful about the transition, and attempting to avoid a stressful start to a time of year that should be leisurely and enjoyable.

1.    Try to plan an activity at the beginning of the summer so that your child doesn't suddenly have huge amounts of unstructured time on his/her hands.  Examples may include an early summer vacation or a trip to visit relatives or friends.  Pre-set your child prior to the trip so he/she will know what to expect.  Get your child's input regarding types of activities he/she would like to do while away.  Come up with an itinerary and share this with your family.

2.    Accept the fact that sibling rivalry increases in the summer, particularly if kids are at home.  Talk to your children about how they can work together to make home a more peaceful place.  Try to plan activities that everyone enjoys- picnics, movies, hikes etc.  If your children's interests vary, alternate and let them know that they may take turns choosing activities.  Also, make sure your children have plenty of activities that don't include each other.

3.    Try to keep a routine; although it will likely be a much more flexible routine than the one you have during the school year.  A child needs to know upon getting out of bed in the morning what the general routine of the day is going to be and what the day is going to look like.  For some children, a visual schedule with either words or pictures is helpful.  Remember- Keep It Simple!

4.    Give your child chores around the house and make this a part of their daily routine.  If your child already has specific chores, you may want to add a few more, especially if they aren't in a 12-month program and are spending more time at home.  Examples can include yard work, setting the table, folding laundry and the like.

5.    Capitalize on your child's interests.  If your child loves art, keep a supply of art supplies handy and encourage their use.  You could even enroll your child in an art class if it is appropriate.  

6.    Keep reading!!!  Continue to read to your child daily!  Make regular trips to the library in the summer and make sure you have plenty of books, tapes and videos for those rainy days.  Ask your child's teacher for a list of suggested reading.  I recommend Jim Trelease's   "The Read Aloud Handbook: Sixth Addition" (available at as an excellent resource for parents to choose appropriate books to read.  You can find this book in your public library or local bookstore.

7.    Make sure your child has opportunities to interact with their peers.  If friends aren't readily accessible in your neighborhood, you may have to do some "importing. When planning for young children or children with limited social competence, keep the play dates short.  Get a sense from your child, before the friend comes over, of what they may want to do.  This will help to avoid your children complaining "we're bored Mom, What can we do"?   

8.    Get your children outside to get plenty of exercise and fresh air.  Limit the amount of time your child spends in front of the television and video games. While you certainly don't want to make your child do "school work" in the   summer, you also don't want them to vegetate in front of electronic devices.  Set a reasonable time limit for TV, Computer and Video game activity.

9.    Do allow for "down time".  We all need time to hangout and do nothing.  This may be difficult for some kids, because they just don't know what to do with themselves and because there is an expectation that they will be entertained.  Help your child to be comfortable with down time, and help them to see that sometimes it is ok to just plain relax and watch the world go by! 

Camp Spectacular: The "Real" Camp Experience for Children with High Function Autism and PDD-NOS

By: Mary Fornabia, Special Education Resource Specialist

This time of year, parents are making plans for what their children are going to be doing come summer.  For many, this means researching what's available and registering for summer programs and summer camps.  Summer camp programs for children with disabilities provide a great way for kids to interact with their peers in a fun, safe and supportive environment that can foster ongoing learning in academics and in building social skills.

Camp Spectacular is one such camp.  Located in Glenville, NY, the camp is operated by the Center for Disability Services and Steve Szalowski, LCSW administers the program.  Camp Spectacular provides students ages 9-16 an opportunity to build social skills while engaging in "real" camp activities in wilderness-like surroundings.  The camp runs for two weeks and kids can enroll in one week at a time or both weeks if they prefer.  The program consists of structured activities including team building, outdoor activities, athletic activities, swimming, arts and crafts, music and drama.

Sandi Smith is one mom who is well acquainted with Camp Spectacular.  Her son Brian, age 15, has attended the camp for the past 3 years and he looks forward to it each summer.  "This is a group of kids that he can get along with, in a real camp setting," says Sandi. "Steve Szalowski really gets these kids and helps them make a working, cohesive unit."  Sandi is a retired teacher and she looks at this camp program through the eyes of a teacher and as a parent.  She feels that this camp is a comfortable place for kids with disabilities to go to camp.  Brian comes home after a day at camp smiling and laughing and eager to tell his mom all about his day.

For more information on Camp Spectacular, visit the camp website or call 384-3081 or 384-3080.

What Parents Need to Know About Extended School Year Services for Students with Disabilities

By: Heather Loukmas, Special Education Resource Specialist (A Discussion with Steve Oill, Parent Advocate for the Home and Community Based Waiver Program, Parsons Child & Family Center)

Parents have many questions when it comes to understanding the regulations surrounding Extended School Year (ESY) Services for students with disabilities.  Extended School Year Services are included in the Individuals with Disabilities Education Act (IDEA) and are essentially special education and related services that are provided to a child with a disability beyond the normal school year in accordance with the student's IEP and at no cost to parents.  ESY services are NOT summer school services but can occur at summer school.  In order for a student to qualify for ESY services, they must be a child with a disability as defined by IDEA and the Committee on Special Education must determine that the student needs ESY services.  Under New York State regulations, students who are eligible for ESY services need them in order to prevent "substantial regression" over the summer.  Substantial regression is a student's inability to maintain current developmental levels due to loss of skill, set of skill competencies or knowledge during the months of July and August.  There is the expectation that all students will require a time period of remedial education at the start of each school year to bring them back to where they were when they left for the summer, the difference for students with disabilities is if it would take them an inordinate amount of time to get the student back up to that level then they may qualify.  ESY services are NOT designed to advance a student but rather to "maintain" at their current level.
One professional working in the field that has worked with parents and school districts on the issue of ESY services is Steve Oill, Parent Advocate for the Home and Community Based Waiver Program at Parsons Child & Family Center in Albany.  Steve says that because state regulations are silent on exactly what constitutes "substantial regression" and that it is left up to the discretion of the CSE to decide, the key is data collection throughout the year. According to Steve, it is important for parents to do their own tracking and to work with their child's teacher to assess how a child does upon returning to school after breaks during the regular school year such as after extended holiday breaks and for some students, even after weekends.  Data should be focused on documenting how long it takes a child to return to the level they were at before they left for the break or for the weekend.  Since there isn't always going to be agreement among CSE members on what constitutes "substantial regression" having that data upon which to base decisions is essential. Parents can do some of their own tracking by using differences with homework before and after breaks as one benchmark. 
State regulation also does not specify what programs and services are offered under ESY services.  Again, those are decisions that need to be made by the CSE and are based on the individual student's IEP in accordance with their area of need in which the substantial regression may occur.  In other words, it is not enough for the CSE to determine that a child needs ESY services in order to prevent substantial regression and for a school district to say "this is what we offer".  The ESY services need to be appropriate for that child's area of need.  If a school district does not have services that are appropriate to meet a particular child's needs in their home district, than they can contract with a nearby district, BOCES or another agency to provide the services.
Steve says it is important to remember that all goals on a student's IEP need to be taken into consideration, not just academic goals.  Sometimes social and emotional goals get overlooked.   Data collection in these areas may be a little more difficult to do because the regression is not as easily as it is with academics and services may be a little more difficult to provide.  However, if a student truly needs services in this area to prevent summer regression, than it is worth pursuing.  Again, data collection is key and working with a particular teacher or other school personnel to track data on a student's behavior following breaks during the regular school year is important.  Data collection could include the use of a checklist and observing how many times a student uses an escape behavior or how many times they get out of their seat as two examples of trackable data.
According to Steve, the main element for the CSE to remember when making decisions about ESY eligibility and programs and services is to focus on what the child needs not just what is available in the district.  If a child needs to work on social skills over the summer to prevent substantial regression, then maybe placement in a regular summer camp program such as a YMCA program with support might be appropriate.  Flexibility and creativity are key.  It's also important to remember that when it comes to ESY services, some aspects of IDEA, such as least restrictive environment do not necessarily come into play.
Steve's advice to parents in advocating for ESY services for their children is that if they believe their child truly is at risk of substantial regression without ESY services, then they need to be prepared with data and logical arguments.  Decisions of the CSE need to be based on something, it is not enough to use emotional arguments and say "I want these for my child" the proof that its needed has to be established through the data. 

(Steve will be conducting a workshop on Extended School Year Services on behalf of the NYS Special Education Taskforce on April 14, 2010 from 10:00am-12:00pm at the Colonie Town Library in Loudonville.  To register or for more information, please e-mail Judy Swierczewski at
Michael & Mary-Jo JacksonParenting with a Purpose: Meet the Jacksons

By: Adene Karhan, Special Education Resource Specialist (An Interview with Mary-Jo and Michael Jackson)

I first learned about Mary-Jo and her family from a colleague, who told me about a couple in Fulton County that had adopted numerous children with disabilities. I visited the family's website, where I read that Mary-Jo and Michael had raised seven biological children and adopted twenty-three children with varying degrees of disabilities.

I met with Mary-Jo in her home to speak with her about her experiences in parenting children with a vast array of special needs. Mary-Jo spent the first few minutes of our interview providing me with a brief biographical history of her family.

From the time that they married, Mary-Jo and Michael knew that they would one day adopt. They gave birth to seven children biologically, and had a wonderful parenting experience. In 1994, when their youngest child was 10-years-old, Mary-Jo and Michael adopted their first child from Russia. At that time, international adoption was a much less complicated process. Michael was able to travel to Russia while Mary-Jo stayed home with the other children. The little boy that they adopted was 3 years old and had a malformed leg. When Michael returned home, he immediately told Mary, "We have to do this again. Those orphanages are just bursting with children." During the next fifteen years, Mary-Jo and Michael added twenty-two more children to their family through adoption.  A number of their children were originally adopted by US families who were unable to meet the child's needs. Mary-Jo and Michael have provided a much needed home to children from disrupted adoptions.
When Mary-Jo and Michael adopted their first child, they were living in Indiana, and knew very little about the special education system. Mary-Jo had her Master's in Child Development, so she worked very closely with their son at home, helping him to learn the English language and other crucial developmental skills. Mary-Jo recalls that the school system seemed unprepared to deal with a child from another country at that time. The specialists told her that they could not test him because he did not know English. Over the years, this was an obstacle that they encountered time and time again as they attempted to acquire services for their children.

Mary-Jo and Michael have adopted children with a wide range of disabilities, ranging in severity. Some of the children have missing or malformed limbs. One child has a severe birth defect called arthorogryposis, where a number of joints are locked in place at birth and remain locked throughout the child's life.  One child is deaf and another child is partially deaf. One child has autism, and two suffer from heart conditions. Among the biggest frustrations that Mary-Jo and Michael have faced is that some of the children are not yet classified, or receive a vague diagnosis because they  "just don't reach the mark", but the specialists are unable to provide a clear diagnosis. These children are described as having "soft neurological issues", but obtaining services can be very challenging without having a clear diagnosis.

While Mary-Jo was used to caring for a large family after raising seven biological children, she found that parenting her adopted children was much more challenging in many ways. One of the biggest challenges in adopting internationally is that very little background information is available about the children. Most were exposed to generations of poverty, and received little to no prenatal care. Some were seriously abused or neglected, and some were exposed to alcohol and other toxins in utero. The children came with baggage that Mary-Jo and Michael had no control over, yet their early childhood environments have had such a tremendous impact on their later lives. Several of the children are officially diagnosed with Fetal Alcohol Syndrome, and a few others show some symptoms of prenatal alcohol exposure, but there is not enough background information on the children for the doctors to make a formal diagnosis. Some of the children suffer from attachment disorder due to the abuse and/or neglect that they were exposed to prior to adoption. In addition, some of the children are displaying obvious signs of depression, anger, and other emotional disturbances.  Mary-Jo often has to remind herself that the children were traumatized before they came to her and that it's "not her fault".

In order to keep life running smoothly for the nineteen family members that are still living at home, Mary-Jo has developed a very structured routine. She has an extra large wipe board hanging in the kitchen with each child's name on it along with the days of the week. At the beginning of the week, she writes down all activities, doctor's appointments, and therapy sessions for each family member. Mary-Jo and Michael recognize the importance of extra-curricular activities in building confidence, social skills, and other skills in their children, so even though their afternoons and weekends are very hectic, they have enrolled their children in multiple activities.

On a typical weekday, Mary-Jo gets up at 4:45 AM and runs for an hour on her elliptical machine while Michael gets ready for work. The kids get up at 6:30 AM and are on the bus by 7:15 AM. While the kids are at school, Mary-Jo does laundry, prepares afternoon snacks for the kids, runs errands, works on PTA or church paperwork, and prepares dinner. She has found that one of the biggest areas that she has control over their budget is with the groceries, so she prepares as many things as possible from scratch in order to save money. Fortunately, none of the children are on special diets, so she is able to prepare the same meals and snacks for the entire family.

When the children come home from school at 3:15, the first thing that they have to do is put away their laundry. Once they are in high school, Mary-Jo places the responsibility on the children to determine when they will do their homework. The elementary age children have to sit at the table to complete their homework. One of the children has ADHD and is easily distracted, so Mary-Jo carefully reviews her homework assignments with her and then sends her to a room where she shuts the door until her homework is completed. She then receives a small reward such as playing her Leapster for a few minutes. This behavior management technique has been working very well in motivating her to complete her homework.

Michael gets home from work at 6:00, and Mary-Jo usually has dinner on the table within a few minutes of his return. One of the few rules that Mary-Jo makes the children abide by is that they need to eat at the table with the family if they are home when dinner is served. After dinner, the children complete chores, and then have time to play or watch television before their bedtime. The youngest children are in bed by 7:30 PM, the elementary and junior high aged children go to bed at 8:30 PM, and the oldest need to be in their rooms by 10:00, which is when Mary-Jo and Michael typically go to bed.

Mary-Jo admits that being an adoptive parent of children with special needs can sometimes feel very isolating. A few years ago, she joined an on-line support group, which has served as a lifeline to her. The members formed such a connection that they now meet face-to-face on an annual basis even though they are scattered throughout the country.

When I asked Mary-Jo what it's like to navigate the special education with so many children with such tremendous needs, she said, "Michael and I sometimes describe it as crawling up Mt. Everest on our hands and knees backwards in a snowstorm." One of the most difficult concepts to grasp as a parent of children with disabilities is that there is not always a set course that can guarantee success.  Just because something worked for another parent or because common logic or expert advice says that choosing a set path will result in a certain outcome, does not always mean that you achieve the outcome that you desired.  Mary-Jo states that "it's rarely black and white", and sometimes professionals provide conflicting information. Other times, parents are faced with a general lack of information in a specific area, and they have to keep asking questions. Mary-Jo and Michael have found some very helpful professionals whose expertise has become invaluable in treating their children, but they have also found that there is a general shortage of professionals in their area.
While Mary-Jo and Michael have opened their hearts and home to children who have been traumatized and neglected, they are aware that their love will not always be returned by the children in the way that they expect. They try to maintain reasonable goals for themselves and for their children. Mary-Jo states that their goal is simply "to raise children who are going to function in society and who are not going to do anything illegal."

To visit the Jackson Family Website, click here.

In This Issue
Transition to Summer
Camp Spectacular
What Parents Need to Know About Extended School Year Services
Parenting With a Purpose: Meet the Jacksons
Quick Links

Additional Upcoming Workshops

April 26, 2010- "Addressing Challenging Behaviors", Amsterdam Support Group/ Catholic Charities of Fulton and Montgomery County, Amsterdam, NY  6:00pm-7:30pm

April 27, 2010- "Tried and True Tips for Building a Productive Relationship with the CSE & What to Do if Things Go Wrong"/ Lexington ARC, Gloversville, NY 11:30am-1:00pm

May 1, 2010- "Grandparents Who Have Grandchildren with Developmental Disabilities"/ Wildwood Programs, Clifton Park, NY  10:00am-11:30am

May 10, 2010- "Special Education Record-Keeping Workshop"/ Saratoga Springs Public Library, Saratoga Springs, NY  9:30am-11:30am

May 25, 2010- "Special Education Record-Keeping Workshop"/ Saratoga Springs Public Library, Saratoga Springs, NY  6:30pm-8:30pm

June 2, 2010- "Special Education Record-Keeping Workshop"/ Saratoga Springs Public Library, Saratoga Springs, NY  9:30am-11:30am

Visit the PNCR website for detailed descriptions of workshops and locations.

Contact the PNCR
Parent Network of the Capital Region
1190 Troy-Schenectay Rd.
Latham, NY  12110
Ph: 518-640-3320