Twitter Chat: Managing TS in the summer months

Twitter Chat: Managing TS in the summer months

Espanol: Manejando el síndrome de Tourette (ST) en los meses de verano
1. Why is the summer difficult for some families and students with TS?
a. lack of structure/change in routine
b. more screen time
c. less outside/exercise time, especially if living in hot climate
d. socially isolated, especially if student doesn’t have many friends or lives in a rural area
e. child gets bored and doesn’t manage free time well, which leads to frustration, anxiety and/or challenging behaviors
f. fear of transitioning to another school year or to a new grade

2. What are some positives about summer vacation?
a. Can be more relaxed and less stressful, especially for students who do not need to attend all-day childcare or camp
b. Less focus on academics gives parents the opportunity to work on other skills, such as social skills, time management, scheduling, self-care, etc.
c. Time available to be involved in a specific interest/talent such as art, music, drama, sports

3. What are things that I can do prior to school ending to facilitate a positive summer experience?
a. If the child is changing schools in the fall, take a tour of the new school to meet new teachers, counselor, principal, and nurse. Doing this alone, before a school-wide orientation, can help to alleviate stress when the student has to meet with the group.
b. Schedule and end of year, transition meeting in which current teachers can meet with new teachers/staff to discuss strategies and support that was helpful as well as others that were not.
c. Review the new schedule, map of the school which highlights key places (locker, nurse, restrooms, classrooms, etc.) over the summer
d. Schedule another tour immediately prior to school beginning in the fall that includes locker location, practice opening lockers as well as routes to classrooms, cafeteria, gym and nurses office.
e. Work with your child to develop a one-page introduction that can be provided for all new teachers and providers in school. Attach a picture, begin with strengths, areas of interest and positive attributes, followed by areas of difficulties, strategies that have worked and those that didn’t. End with a positive statement regarding the new year and your contact information.
f. Develop with your child a reasonable summer schedule regarding bed time, wake up time and a calendar with possible activities such as computer time and TV. Keeping a routine for waking up at the same time in the summer reduces the difficulties of suddenly having to go to bed and getting up earlier when school begins. Including the student in the decision making will increase the likelihood the plan will be followed.

4. My child needs to attend all day camps/programs because I work. What should I do before choosing a program?
a. It is critical to do your research first! Start by asking your child what kind of activities he/she would enjoy and then make a list of camps that he/she might enjoy.
b. Make a list of your child’s interests, skills, areas of needs, and your concerns or questions. Don’t make the list too long, but prioritize information that will be critical to your child’s success in the program.
c. Contact the program directors at the various camps you selected to give them information about your child and to see if they can accommodate him/her.
d. Consider providing written materials that can be downloaded from tourette.org to help explain your child’s needs. Highlight paragraphs that are specific to your child’s experience.
e. When choosing programs, determine what length of program will best suit your child. For children with social skills deficits or difficulty changing routines, it might be best to choose one summer-long program so your child will have consistency and a long-term opportunity to make friends. On the other hand, if your child gets bored easily or struggles socially, sometimes week-long programs will maintain his/her interest and provide an opportunity to meet new friends each week. If you child has challenging behaviors, then he/she can start with a clean slate each week and practice a plan for improvement in the new setting.
e. Be sure to review information about your child’s needs once camp starts with the staff directly working with your child. Do not assume that the program director explained everything. Ensure that your child will get the supervision, quiet time, snacks, medications, or any other supports he/she needs before you leave.
f. Review the daily schedule (if they can provide one) with your child before camp begins so he/she knows what to expect. Make a plan for situations that might be difficult.

5. My child is staying home with me all summer. What can I do to make the summer enjoyable for both of us?
a. Make a daily or weekly schedule and follow it. Make a picture schedule for younger children or children who struggle with reading. For older children, include details that you feel are important, such as medications, self-care, exercise, reading time, screen time, and scheduled activities. If you are working on independence in self-care (medications, laundry, showering, etc), this is the perfect time to work on these skills. Remember, keeping a schedule doesn’t mean you have to plan every second. Summer vacation provides a break from the many and various stresses of school; rest and downtime are important.
b. Enroll your child in a public library summer reading program and/or schedule regular visits to the library. Libraries have many resources including comic books, story hour, book clubs for different ages/topics, music, DVD’s and computers. In this way, your child is accountable to someone other than you for continuing to read. Build reading time into each day, choosing books or magazines that are entertaining to your child. Don’t worry about if he/she chooses something that you feel is too easy; let your child have fun and be successful.
c. Research summer recreation programs, half-day camps or week-long camps in your area. This can provide you free time to get work or errands done and give your child something to look forward to. It can also help your child make new friends outside of school, which can be really positive. Use the recommendations reviewed earlier to ensure the program can meet your child’s needs.
d. Schedule playdates. Structure them by speaking with other child’s parent, determining an activity that both children enjoy and making it for a specific timeframe your child can handle. Generally, first playdates should be short and then you can increase the length as the children become familiar with each other. It is always best to end on a positive note rather than having a meltdown or problem because the playdate was too long.

e. If your family is taking an extended vacation, encourage your child to help plan the vacation and choose activities. He/she can use the computer to research the area you are visiting and find out what might be fun. If working on organization skills, have your child make a list of what to pack and see if you can help him/her be independent.
f. Visits to local museums, theme parks, nearby towns, etc. can provide opportunities for learning and/or working on social skills. Make a plan and choose a goal to focus on before the outing. For example, if visiting a museum, the goal might be to learn 3 new facts about the current exhibit to talk about at dinner tonight. If visiting an amusement park, the goal might be make a schedule for the day and then use it. Or, it might be to work on using social skills to order meals or request information from park employees. If your child is in need of a fast pass for rides, then he/she might practice self-advocacy to request the pass and explain why it is needed.
g. Develop learning and fun activities into your daily home routine that your child(ren) won’t recognize as learning. For example, have your child plan one meal per week. Provide a budget to follow, choose the entrees and desserts, plan the grocery list, buy necessary ingredients, cook, serve the food and participate in cleanup. This can be a fun family activity that involves working together as well as math and organization skills. If they don’t like to cook, choose a garden project, craft, putting on a show, writing a family newspaper, completing a jigsaw puzzle, or playing board games all which provide learning and enjoyment. Help your child as much as he/she needs at first and slowly allow him/her to become more independent while your oversee the task.
h. Identify age appropriate skills that would help him/her be more independent in the school year, such as making his/her own lunch, getting ready for school, or doing laundry. Provide a list or pictures of the steps involved in each task and help your child follow them. Summer is a great time to teach these skills which fall to the backburner during the school year, when academics take precedence.
i. If your child struggles in an area of academics, incorporate daily practice time into your schedule. Or, if your child lacks keyboarding skills, purchase an inexpensive, fun computer game to practice daily. These skills can be so helpful during the school year but there often isn’t time to teach or practice them because there is too much other homework.
j. Provide rewards for jobs well done. You might provide an allowance for weekly chores. Or, you could plan special one-on-one activities such as going for ice cream or to a movie when a project is finished. It should be tailored to fit what your child sees as a reward and needs to be given at a reasonable time so your child is motivated to continue to work on skills. If you child has difficulty completing a task because his or her symptoms get in the way, it is important not to punish. For example, if your child lacks focus or attention, then he or she may need guidance to complete tasks or reminders to get back on task. Be supportive and encouraging, reminding them that you can’t wait to go get that ice cream as soon as we finish the laundry.
k. Find an activity that involves movement such as walking, swimming or trying a new sport and incorporate it into every day. Activity is healthy for the body, mood, and the brain.

6. What can I do to help my child transition back to school?
a. If you decided not to keep a bedtime/wake up schedule during the summer, re-establish this routine a week or two before school starts.
b. Buy school supplies and prepare the backpack 1-2 weeks early to reduce last minute anxiety.
c. It’s important that your child perceives your relaxed and positive attitude toward returning to school. Children can sense parent’s fears. The more your child sees each year as a new opportunity in which parents and schools collaborate in a positive fashion, the more likely anxiety will be reduced.

This Month’s #TouretteChat Expert:
Pamela Malley, MA, CCC-SLP is a speech-language pathologist and the parent of a child with Tourette Syndrome. Pam received her bachelor’s and master’s degrees from the University of Texas in Austin.

She has previously served on the faculty at Our Lady of Lake University and has worked at several school districts in Texas. Pam is a member of the education committee for the national Tourette Association of America and provides in-services for educators on various topics related to improving social, academic, and communication skills in children with TS.

Funding for this conference was made possible in part by the Centers For Disease Control and Prevention. The views expressed in written conference materials or publications and by speakers and moderators do not necessarily reflect the official policies of the Department of Health and Human Services, nor does the mention of trade names, commercial practices, or organizations imply endorsement by the U.S. Government.