☼  Plan itineraries, budgets, transportation and packing for vacations

☼  Research camps, summer sports leagues, arts classes and recreational programs

☼  Organize parties, sleep-overs, and family gatherings (menus, venues, invitations, etc.)

Set summer goals

 ☼  Read books and track progress  (pages per day, week and month)

☼  Create a budget and savings plan around your child’s interests

            ●  How much will it cost me to…? How much time will it take to…?

            ●  Set a summer savings goal (weekly, monthly, etc.)

            ●  Brainstorm strategies for summer earnings

 Consider helping your child develop Executive Function (EF) skills

☼  Enroll your student in a summer EF workshop at RNBC (See upcoming events in this newsletter)

☼  Be an active part of the process and successful outcome.

☼  Be the cheering section when your child accomplishes goals.

☼  Mastering EF skills over the summer helps children transition to the next academic level. These skills help children: 

• Understand curriculum as it becomes more abstract
• Learn how to transition smoothly from subject to subject
• Prioritize school work
• Balance academic life with extracurricular activities
• Manage social demands

 Give your child the tools, knowledge, self-confidence and discipline to succeed this up-coming school year with summer planning!  Help make your child’s goals a reality.

Regardless of what clinical service you are interested in obtaining for your child, I will spend a few minutes on the phone with you gathering information about your child’s current situation, and explain in detail the services we provide.  Often the process is straightforward, especially if you are certain of the service your child needs.  For example, if it has been recommended that your child undergo a comprehensive neuropsychological evaluation, I will spend a few minutes on the phone explaining the evaluation process, answer any questions you may have, and determine which of our clinicians would be the best fit for your child. 

If, on the other hand, you are not certain about the next step you should take, we will engage in a more in depth discussion in order to gain a better understanding of your child’s current needs and determine the most appropriate intervention.

Please feel free to call me directly at 847–763-7944.

HELPFUL TIPS ON SCHEDULING EVALUATIONS AND SCHOOL IEP MEETINGS:

1. Wait time for evaluations vary in length.  To be on the safe side, anticipate a two month wait. 
2. Typically, we receive the most calls for evaluations following parent teacher conferences in the fall and spring. During those times, evaluations are commonly scheduled further out in time depending upon our psychologists’ availability.
3. If you are planning to schedule an evaluation during the summer we recommend that you call ahead, before the end of the school year, to obtain forms for teachers to complete.
4. If you are planning to schedule an IEP meeting at the beginning of the school year, and are interested in having one of our clinicians attend, call to schedule with that clinician ASAP.

We agreed that my evaluation would begin with a visit to observe Teddy in his classroom, after which we would engage in the tests necessary to structure a program of treatment.

Now here’s the strange part of this story. When I arrived at Teddy’s school, I looked around for a profoundly handicapped little boy, unable to relate to other children, beset with learning difficulties and prone to inappropriate behaviors. I couldn’t pick out a single child who matched the description. The little boy lying on his back in the corner, playing with an airplane over his head? That was Ray. The child who gleefully knocked over a little girl’s stack of blocks? Charlie. The one coloring a dog purple and laughing wildly? Brett.

Teddy was the one sitting chin in hand, listening to another boy talking about video games. When the teacher called the class to attention, he sat quietly. When she asked him a question he answered. He didn’t have the small muscle coordination to write the alphabet, as some children did. He talked without raising his hand. He tried to go to music class in his stocking feet, and he tended to repeat things in a way other children thought was weird. “I like your Perry the Platypus shirt.” he told Ray. “I like your shirt. I like your shirt. I like your shirt.” But he was certainly not profoundly handicapped.

So why did Mrs. Walker think he was?

There’s a path parents take as they come to terms with a child’s neurobehavioral difficulties. Knowing a child has disabilities can be the loss of a dream. Parents grieve for that ideal child who could have become a lawyer, a doctor, or otherwise fulfill imagined goals.  But most gradually achieve acceptance of their child’s condition and many become determined advocates. They take stock of their own intelligence and capability and think, “Wonderful that I have this child, who needs so much help, when I am exactly the sort of person who can provide it. I’ll give this child experiences that will make the most of his strengths. I don’t know how yet, but I’ll find out.”

But other parents, among them Mrs. Walker, have a sense of self that feels compromised by their child’s perceived shortcomings. Teddy was not profoundly handicapped, but he was far enough from brilliant that Mrs. Walker felt he added nothing to her worth. She was not able to form a close connection to her child. In clinical terms she was as much in need of treatment as Teddy.

Despite a lack of emotional connection, Mrs. Walker did seek the best help for her son. After a year and a half of treatment he has a great team of therapists and teachers. He performs beautifully with them because he feels secure and comfortable. With his mom it’s a different story. If she says put on your shoes, he throws the shoes.  At the supermarket he runs down the aisles, cries, knocks boxes off shelves. If a visitor comes to the house unexpectedly he has a total meltdown, flailing and screaming.

Even in calm and happy moments, when Teddy looks for his mom’s reactions he can tell he’s not pleasing her, that none of the things that are big milestones for him are a thrill for her. He would not be able to formulate this verbally, but he feels, accurately, that he can work as hard as he can but it won’t ever be enough.

Part of my treatment of Teddy is necessarily therapy for his mom, who at first took it for granted that there was no other way she could feel about a child whom she saw almost entirely in terms of his limitations.  Gradually she is learning to recognize that certain traits of Teddy’s character—a fierce independence,  a willingness to work hard to improve–  are both admirable qualities and akin to her own nature. The gap between them has narrowed a little.

I have seen developmental miracles happen with children who have similar problems and aptitudes. A girl much like Teddy when I first knew her has moved on to attend a local college and has entered a program that prepares her to teach preschoolers.  Her parents built on her strengths, and were tireless in their efforts to help her overcome her problems. They point out that she has become a wonderful, empathetic daughter whose company is a delight to them.  She is not the child they hoped for, but they love the child she has become.

 1.       Adapt your explanation to the age of the child

When deciding what to tell your child, be sensitive to their level of developmental and emotional maturity. Young children are very concrete in their thinking and handle information best when it is given to them in short, simple facts.  Discuss specific, observable problems that the child is experiencing (e.g., trouble raising hand in class; difficulty remembering their alphabet letters). Older children and adolescents want and can understand more specific facts and information.  Children should be encouraged to ask their own questions in order to clear up fears and misperceptions. The sooner you can provide supportive and accurate explanations for why your child is struggling in some areas, the less likely your child will develop negative misconceptions.

2.       Talk about individual strengths and weaknesses

Talk to your child about the things he/she is good at and be specific about the things that are harder.  Show him/her examples of schoolwork that illustrate both.  Reference other significant people in a child’s life (e.g., “Your brother, Brian, is a really good swimmer, but he takes a long time to read a book. You’re a fast reader, but have trouble writing.”).  Explain to your child that his/her difficulties are common and that there are other children in his/her class who require extra help (e.g., take medicine, talk to a psychologist, work with a tutor).  As a parent, model how you celebrate your own strengths and embrace your weaknesses. 

3.  Have more than one conversation

Talking about a child’s neurobehavioral disorder should be an ongoing series of discussions, not just a single information giving session.  Children need time to hear what is said and they process information differently as they grow older.  Only give as much information as you believe your child can handle at a time.  Be prepared to repeat information and explanations several times. Some information may be hard for children to accept or understand. Asking the same question over and over may also be a child’s way of seeking reassurance.

4.       Enlist help

Parents need not be solely on their own in talking with children about their difficulties.  Seek advice from the professional who conducted the assessment and knows your child.  Encourage your child to talk to his or her teacher or mental health professional about any questions or concerns.  Sometimes it is easier for children to express their feelings to someone outside the family. Inform teachers of what your child has been told.  It can be very confusing to a child if the school has an interpretation that contradicts what the child and the parents believe.  Obtain pamphlets, books and videotapes that you can share with your child.  Reading books and watching videos together can help open up discussions of these important issues.

5.       Plan for Treatment

Focus on the fact that your child can be helped.  Let your child know all the different ways that you are going to help him/her to learn and/or feel better.  Depending on your child’s age and maturity level, his/her understanding may be enhanced through the use of concrete examples. (e.g., Daddy needs glasses to help his eyes see better.  You will go to a special teacher who will help you read better.”)   Ask your child if he/she can think of ways to make their difficulties easier (e.g., “Can you think of anything that your teacher can do to help you if you’re feeling really frustrated in class?”)  The more the child feels included, the more likely he/she is to cooperate.  Adolescents should be taught how to advocate for their own specific learning needs.

 Dr. Leslie Baer Cohen is a Licensed Clinical Psychologist who specializes in Early Childhood Development, assessment, school consultation and evaluation of preschoolers.

1. Why is it important to have a child participate in research studies?

Research studies help us understand how the brain, body, and behavior function together. Through research, we find new ways to help children.  For example, research studies can lead to (1) better diagnostic assessments (2) preventative medicine, and (3) effective ways to help children. What we learn from research should guide your decisions about what to invest your time and money in for future therapies. With so many alternatives available today, you should look for practices that are evidence-based. When participating in research, an idea may first be theory-based, but in doing the study, eventual evidence will be available.

Additionally, it is important to consider that research projects need to have enough statistical “power” so that the findings are meaningful. Thus, research studies are requiring larger and larger samples sizes to show effects. If a study has low enrollment, the findings may not be able to be validated, published, and distributed and new diagnostic tools or promising interventions may not be available.

2. What are the benefits and risks of research participation?

The benefits and risks of research studies vary. However, any research study that involves human subjects requires Institutional Review Board approval which is, in essence, an ethics committee that protects humans’ rights. They ensure that no unnecessary risks are taken, that you are not being coerced into participation and that the study goals are consistent with the methods. They also ensure your identity is protected.

Benefits may include immediate benefits (some studies offer limited financial compensation or small tokens like snacks or small toys). In addition, sometimes you have access to cutting edge, theory-based interventions that are likely to be effective at no cost. In other circumstances, you will also receive a feedback report at the end of the study that helps you learn more about your child. However, other studies may offer no immediate benefit, but they will help advance our understanding and provide benefit in the future. Many children also enjoy participating in “science” and often visit a university or hospital, which they may find interesting in and of itself.

3. Will the parents get an opportunity to find out the results of the study and what it means to their child?

The type of feedback you receive may vary based on the study. It is important to keep in mind that many laboratories are only research laboratories though, so even if your child does or does not meet study eligibility criteria, a full clinical evaluation may be warranted. However, the research facilities will not be able to render a clinical diagnosis.

Sometimes testing scores can be shared; sometimes genetic information or brain images or responses are available to the parent. Often times a feedback session is offered with the Principal Investigator, where you meet to discuss the findings and have the opportunity to ask questions.

It is important to note though that some results may not be available to you as they are only meaningful in the context of group data, and often times, part of ongoing research studies. The larger data set and conclusions may not be available until the study is completed. Then, you are encouraged to follow up with the Principal Investigator for published abstracts or manuscripts to learn more about the overall findings from the study.

4. Does a child have to know he/she has ASD in order to participate?

Again, this will vary based on the study. Knowing if/when to tell your child that they have a diagnosis is a personal decision. Many studies have both control and diagnostic groups and the child may just be told that they are participating in a study to learn more about other children like him/her. Some studies do mention the diagnostic group in the title of the study which may appear on recruitment materials or consent/assent forms so it is a good idea discuss the study with your child before enrolling in it.

Mention the word adolescence to many parents and the response is more often than not rich with worry and concern.  Despite the challenges for both teens and parents during this developmental period, it can be easily navigated with knowledge, appropriate boundaries, and empathy.  During this stage, adolescents are taxed with many important developmental tasks including developing a personal and social identity, making decisions about higher education, and making sense of physical changes.  Today all these important milestones are set within the context of social media – a source of information that has altered how we relate with one another.  In working with parents, a few guiding principals have helped families transverse commonly asked questions or concerns. 

Appropriate Boundaries & Communication

During adolescence, teens naturally shift their focus from family to their peers and social group.  A young teen’s relationships with peers often will absorb much of their time and energy.  Parents are encouraged to foster their adolescent’s interest in relating, while ensuring appropriate boundaries are in place.  We work with teens and their families to balance peer and family time.  Young adolescents need personal space and time to devote to themselves, school work, and peer relationships.  Teens, although they may never admit to this, need boundaries and support from their parents during this time. It is through these boundaries and limitations (when necessary) that they are able to feel secure in exploring the social world.  Staying connected with family is important during this time. As much as parents are processing the changes of their child as they grow into a teenager, so too, is the young teen experiencing a host of emotions.  As much as parents become accustomed to one word answers, it is important to continue to express interest, set appropriate boundaries, and know about what is occurring for your budding young adult.  Some helpful tips for parents and adolescents to keep communication lines open include:

• Scheduling daily time to discuss school, upcoming events, etc…. (e.g., at dinner, before going to sleep). 
• Scheduling monthly dates to be with your teen, engaging in something that is naturally interesting to them and that they enjoy doing. Let them teach you something about what they enjoy doing.
• Allow your teen to be involved in forming specific rules, responsibilities, etc…. If they have a voice in a decision, they are more likely to follow that rule and it helps them learn important compromising skills.
• Teens should not be in their room for the majority of their day. While they do need their space and time in their room, they should also be around family members. Discussing with your teen the importance of attending dinner and/or interacting with family members is encouraged. When working with teens, we often let them know that if they are involved at home, their parents are less likely to worry or “nag” them about spending time together.   

Social Media

Today adolescents spend most of their time engaging on social media websites or texting.  These outlets have both pros and cons to their use and their impact on relationships.  Teens are able to be connected to friends outside of school more easily, however, miscommunication often occurs when a text’s intonation or timing is misinterpreted. Social media has also given birth to cyber bullying. In 2007–2008 1 in 3 students reported that they experienced bullying of some form.  Parents are often left trying to figure out how much exposure they should allow their teen to have within these mediums and how to protect them from the pitfalls of virtual communication.  The following tips may be helpful in navigating technology together with your teen:

• Limits should be placed around texting and being on the computer for social purposes. For example, many teens often multitask (e.g., texting while completing homework) – completing homework in a distraction free setting is encouraged.  Talking with your teen that if they focus strictly on school work for a period of time, the work will be completed quicker, and thus enable them to utilize social media sooner.   
• Parents often take away cell phones or access to social media when providing consequences to their teen (for behavior, decline in grades, etc…).  Given the importance of social relationships to adolescences, complete removal of access to friends is discouraged.  Instead, think about decreasing the time they have on social media.
• If your teen reports cyber bullying or school bullying, it is important that this is brought to the attention of the school.
• For help navigating the school environment, Barb Resnick, RNBC’s School Liaison, can help to facilitate discussions with the school and present possible solutions. Please call 847–933-9339 to schedule an appointment.
• Additional resources on bullying can be found at:
  • http://www.pacer.org
  • http://www.cyberbullying.us/resources.php
  • www.apa.org/education/k12/bullying.aspx
  • http://casel.org/

Emotional Changes

During adolescence, young teens are experiencing physical, social, and psychological changes and growth.  In the midst of the excitement about dances, friends, and preparing for college, some teens struggle with stress (e.g., about grades) and mood changes.  Some mild irritability is expected (sorry parents!) However, any significant increase in sadness, irritability, or anxiety should be closely monitored. In addition, any decrease in pro-social behaviors including socializing with friends, declines in grades or withdrawing from (once enjoyed) activities – are also signs of more significant difficulties.  The following are important things to keep in mind:

• Parents should check in with their teen to monitor mood or any significant events that may be impacting their behavior.
• If parents have concerns regarding their son or daughter’s emotional functioning, school based or outpatient individual psychotherapy can help support the teen and family. RNBC offers individual therapy to children and teens. If you have concerns about your teen’s mood and would like an evaluation and/or treatment, please call 847–933-9339 to schedule an appointment. 

Adolescence is a period we all remember – the drama, the uncertainty, and the excitement.  However, all teens are not alike, so each journey through adolescence will look and feel differently.  Despite the increasing independence, adolescents are still very much in need of their family to help guide this progression.  Parents that continue to display empathy, patience, and openness to their young teen, will provide an environment for a teen to be self-confident and assured.

“Her teacher says she’s ADD, and isn’t paying attention,” Mrs. Miller said. “And she is kind of dreamy. I thought since she’s so young—Sara is in first grade—she might just grow out of it. But our physician Dr. Rice said no, and put Sara on Ritalin. He’s puzzled, though, because it hasn’t done a bit of good.”

As her mother talked, Sara frowned with concentration, knowing that the conversation was about her, and trying to understand what was said.  As I smiled to reassure her, I saw her eyelids flutter. For perhaps ten seconds, the little girl simply looked into space. “Sara?” I said. It was clear she didn’t hear me. As I repeated her name the spell seemed to lift.

“Right there, that’s what we’re talking about,” Mrs. Miller said.  She seemed distressed by having witnessed her daughter’s momentary vacancy. I on the other hand felt relieved. Now I had a pretty good idea what we were dealing with.

“I’m sure you’re right about the Ritalin not helping,” I told Mrs. Miller. Explaining to Sara’s mom what her child’s staring spells were, I said, “I’d like to do an EEG to confirm what I think is going on, but I think we can come up with a more useful diagnosis.”

After the technologist set up the EEG, Sara twice experienced periods of vacancy, each time seemingly unaware that she had been “away.”  The EEG showed exactly what I suspected. Sara had a mild form of epilepsy called  “absence” that consisted of many small, momentary staring spells over the course of a day.  Sometimes a child might be “absent” fifty or a hundred times in twenty –four hours, severely hindering her ability to concentrate and learn. Usually occurring for the first time between the ages of four through eight (although these spells can start as early as age three or as late as twelve) absence is a relatively common condition. But because its signs are so subtle, it can be overlooked or misdiagnosed.

Ritalin was not a useful drug for this disorder. But when I prescribed an anti-seizure medication, the   spells went away.

“It’s a real difference,” Mrs. Miller told me after about two months. “I hadn’t realized it, but I was getting aggravated because she often seemed not to hear me when I asked her to do something. It was affecting the way I felt about Sara and how I treated her. And Sara hadn’t been keeping up with her class. I believe her teacher thought she was slow. Now that she’s taking everything in, she’s right where she ought to be. The medication hasn’t  changed Sara, it’s letting her be herself.”

 By Leslie Baer Cohen, Ph.D.

 With summer right around the corner, many parents are actively exploring summer programs for their children.  As a child psychologist, one of the more common questions that I hear from parents during this process is, “What, if anything, should I tell my child’s counselor/camp about his/her neurobehavioral problems?”   For many parents, a tension exists between wanting to make their child’s camp experience a positive one and at the same time worrying that telling a camp about their child’s vulnerabilities will somehow be stigmatizing.  Although one size never fits all in the world of children with neurobehavioral difficulties, the following guidelines may serve as useful pointers:

1. Be proactive — Ask questions

Before making a final selection on a camp, you should be prepared to ask very specific questions about how the camp is run. Find out who will be working with your child, how old they are, what kind of training they have had and how behavior problems are handled.  The following questions also are helpful to ask: How much structure does the camp provide? What is their daily routine? What is the adult: child ratio? How many children share a cabin together? Has the camp worked successfully in the past with children who have had similar difficulties?  What kinds of options exist for a one-on-one aide?  What is the camp’s philosophy? Is it competitive?  If camp personnel are unable to answer these questions to your satisfaction, it is probably not the best place for your child.

2.  Define the problem

Most good camps will want to know as much as possible about your child’s strengths and vulnerabilities.  Generally speaking, knowledge is empowering.  Give the staff a true and honest account of your child’s special needs (e.g., level of inattention/hyperactivity; motor problems; language problems; trouble with peers; sensory issues; previous experience with camp, medications). Make sure they know this is something you consider to be important. You can help educate the staff by spending time with them and answering and asking questions before you drop off your child.  Rather than simple giving a label that is open to interpretation, it is often more helpful to provide specific behaviors that your child is likely to exhibit.  For instance, instead of just saying “My child has ADHD,” it may be more helpful to say, “My child has ADHD, which means that his ability to pay attention for extended periods is not as strong as others his age.”

3. Offer ideas

When discussing your child’s special needs, offer some easy to implement strategies that you have found to be helpful.  Enlist help from your child’s teachers and other specialists (e.g., speech/language, therapist, psychologist, occupational therapist).  At the same time, provide some predictions about what types of activities at camp may be the most challenging for your child (e.g., unstructured time, overstimulating activities, getting dressed after swimming, lunch) so that the counselor can take a proactive stance.  Remind the counselor about the importance of positive reinforcement, close supervision, and appropriate boundaries and consequences. 

4. Provide references

Don’t assume that camp staff will understand exactly what your child’s neurobehavioral disorder entails. Provide some simple and direct printed information stating what the problem is and how it may manifest at camp. (Staff at RNBC can help you with this information.) It is considerably more likely that teenage counselors will read a one-page summary than a book and a mountain of papers.  If your child is taking medication and will be attending sleep-away camp, be sure to provide the phone number of the child’s prescribing physician.  In addition, provide the staff with a list of emergency phone numbers and email addresses, and make sure they know how to reach you at all times during your child’s camp stay. You may even want to sign a release for your child’s specialist to speak with particular camp staff, such as his/her therapist.

5. Keep in touch

Check in with your child’s counselor on a regular basis to see how things are going. Give them permission to tell you about any problems right away, and work collaboratively with them to resolve the situation. If counselors are willing, send a report form that lists desirable behaviors that can be checked off and returned to you each day. Be sure to read any information sent home from camp and respond promptly with questions.

The following list includes some camps that offer specialized programs for children with neurobehavioral difficulties:

Camp STAR  www.jcys.org/campstar

Camp Hug the Bear (autism spectrum disorders-NSSRA)

Cove/Hyde Park Day School-summer reading and math programs

Camp Neeka (Josselyn Center, IL)

Julie Herr & Associates (Chicago) www.julieherr.com

Camp Firefly www.campfireflyjcfs.com

Hidden Valley Camp (Maine) www.hiddenvalleycamp.com

The Learning Camp (Vail, CO) www.learningcamp.com

Camp Buckskin www.campbuckskin.com

Wolfeboro: The Summer Boarding School www.wolfeboro.org

Summit Camp (Pennsylvania) www.summitcamp.com

SOAR (North Carolina) www.soarnc.org

Global Works www.globalworkstravel.com

Outward Bound www.outwardbound.com

Talisman Programs www.talismancamps.com

LEEP Forward (therapeutic preschool) www.leepforward.com

 Rush University Medical Center also maintains a web-based resource which includes camp information.  The direct link to the summer camps is http://www.rush.edu/rumc/page-1234554460333.html

Disclaimer

There may be camps other than those identified in this article that would be suitable for this patient population. None of the camps identified in this article are owned by, affiliated with, related to or agents of Rush University Medical Center.

Jacy’s first became exposed to the importance of developing executive function skills when she was in a Montessori early childhood classroom.  The children were learning social and academic concepts that were often reserved for older children.  They were excelling in these areas due to the intentional focus on developing executive functions.  Later, when Jacy earned her MS from Erikson Institute, she was able to add another layer of understanding to the importance of these skills.  She strongly believes they form the foundation of life-long learning, as well as provide an avenue for a better quality of life. 

As a part of the McCormick foundation’s grant for 8 Big Shoulder Fund Catholic Schools, Jacy is helping to guide teachers in learning about executive functions through In-service sessions, modeling lessons in the classroom, and is revising the Primary and Intermediate Executive Functioning Curriculum Notebooks.  She will also be engaging with students in one-to-one tutoring sessions focused on developing executive function skills.

In the school setting, Terese works to incorporate RNBC’s Executive Functions Curriculum into the school curriculum. By supporting teachers with their implementation of Executive Functioning lessons in the class, students receive skills needed to be successful in their academics.  

As an Executive Functions tutor, Terese assists in the coordination and implementation of the tutoring program for RNBC.  In doing so, she helps students to incorporate skills that are necessary for success in their school work and beyond.

Terese received her Master of Arts degree in Curriculum Development from De Paul University. As an educator in the Chicago land area for over 16 years, her professional experience includes teaching at the Middle School, High School and Post-Secondary level. She has assisted in developing intervention plans for both ESL and at risk students. Her primary goal as an educator is to assist students to become lifelong learners. Terese is excited to be part of the extraordinary team of professionals here at RNBC.