Going Back to School TIPS Guide



Every Friday Patrice Carroll, Latham Centers’ Manager of PWS Services with world-renowned recognition, posts tips and suggestions to help you take care of your child with Prader-Willi Syndrome. Patrice has years of experience working with individuals diagnosed with PWS, both on and off a school campus. As school is just around the corner we’ve put together a small collection of her School Related Tips. (pictured above: student in Latham classroom)


1. Back to School PWS Style: Any transition can be difficult but the transition from summer to school is one of the biggest of the year. Changing schools, teachers, and the introduction of new peers and new social expectations can take a toll on a child with PWS and, in turn, the whole family. Here are some ways to help make the transition a little less challenging. When properly prepared for, back to school can be a fun and exciting time.
 Meet the school personnel ahead of time. Teachers, coaches, administrators- anyone your child will be in frequent contact with. Most schools will allow for this opportunity.
Check out the environment. Play on the playground or for older kids go to the library, outdoor “hang out” spots and let them explore before the introduction of social expectations is upon them.
 Ask.  Find out what will be taught this year and start discussing it at home.
 Communicate. Use communication journals or ask for a daily email regarding your child’s day. Never solely rely on your child’s account of how their day went. It will also ease your child’s anxiety if he or she knows that everyone is on the same page and are communicating daily.
 Calendars. Make a calendar or a visual countdown to the first day of school.
 If school hasn’t yet started, start the school routine now. Wake up and have lunch at the times that they will be doing so when school starts.
 Training videos. Request that everyone working with your child watch one of the training videos for educators working with PWS. Supply them if necessary. The training videos that are available are thorough and extremely helpful and will give your new team more confidence when working with your child.
 Keep is positive. There will be bumps, expect them. Do not criticize teachers or caregivers in front of your child. This makes forming a relationship next to impossible. If your child does not believe that you have faith in their school there is no hope for success.
 Be mindful of new school clothes. If your child has a sensory processing issue then new clothes and new shoes can be brutal for them. Wash new clothes several times before introducing them and when possible buy used, already broken in shoes. Your child likely already has attention challenges. Being uncomfortable will just add to that.
2.       Attention Span: People with PWS can have difficulty paying attention and/ or maintaining focus for more than a few minutes. Here are some ways to improve your child’s attention span.
 Eliminate distractions. It is often difficult for our kids to ignore distractions.  When practicing focus techniques be sure to keep external distractions to a minimum.
 Make eye contact.  When you are asking them to do something have them make eye contact and keep the instruction simple. Slowly add steps. Paying attention is an essential skill in school and later in life. It will be difficult to teach this if it is not started early.
 Use what they like. Our kids can often focus for long periods of time when it is something that they enjoy. Use that. Focus is something that needs to be practiced every day. Make “focus time” a daily activity.
 Start small. Be sure that activities are timed and not open ended. Schedule activities for short amounts of time and slowly increase the time allotted.
 Practice meditation. Mindfulness and meditation are excellent tools for improving attention span. People with PWS are surprisingly very good at these activities and they have many benefits including increasing focus.
3.       Managing Stress: Stress and anxiety can be debilitating for people with PWS, and a new school year can often be a catalyst for these feelings. Helping them to reduce feelings of fear and stress will allow for greater success in all areas of their life. Here are some tips for helping your child reduce and manage that anxiety.
 Teach coping skills. Deep breathing, visualizations and muscle relaxation are all excellent tools to decrease anxiety.
 Praise bravery. Every time your child does something that previously made them anxious or scared, reinforce their bravery.
 Point out their triggers. The more your child understands what causes their anxiety the more successful they will be in managing their own feelings and actions.
 Stick to a routine. The more predictable the better. Unknowns are very difficult for our kids so limit them as much as possible.
 Check yourself. If you are stressed or anxious your child will sense that and respond accordingly.


4.       Peer Support: Peer support is a helpful and often underused strategy to pull out of your toolbox when your child needs some extra help. Like most kids, it can be easier for our children to accept help and advice from peers rather than parents or caregivers. Giving help when needed and accepting help are valuable life lessons and are often easier to learn when they are peer driven.
 Connect with other families. So many of you are physically isolated from other families with children diagnosed with PWS but social media allows for virtual connections that can be invaluable. With some monitoring you can easily help your child connect with other children with the diagnosis. These connections allow them to not only feel less alone but open the door to peer support in times of need.
 Ask your school for help. Let your child share their story with their classroom. When other students understand what your child is going through and have a better understanding of the syndrome, they are more likely to be sympathetic and helpful rather than isolating. Ask if your child can be a peer mentor to children with greater challenges. Peer mentoring is not only beneficial to other students, it will increase your child’s self-esteem and self-awareness.
 Go to conferences and bring your child. Meeting face to face and sharing experiences can give your child the opportunity to make lifelong friendships that otherwise would not have happened.
5.       Setting Realistic Goals: As the new school year approaches it is important to set achievable goals and to keep the momentum going forward for both you and your child.
 Set realistic goals. Nothing ruins motivation like a goal that is so far reaching that success will not be experienced for some time. Make plans achievable and then keep adding to them. A goal for six months or even one month of appropriate behavior: no skin picking / zero episodes of aggression, may be too daunting for a child who has multiple episodes per week/day. Start with something that can be achieved, reward the success, and then slowly add small increases of new expectations.
 Allow for setbacks. Not achieving a goal does not mean that the goal is unattainable. Look closely at the circumstances, school environment, and anything that could have caused the setback. Get right back on track and keep trying.
 Be skeptical of perfection. If a goal is met 100% every time, then it may not have been the right goal to begin with. We want success, but a goal that can be reached every time without challenge is not teaching your child what it really means to work and  achieve.
6.       Lunch Box Snack Ideas: Snack time is an important break in our kids day. With kids on fewer calories than their typical peers, it is important to use each calorie wisely. Most snacks should fall into the 100-300 calorie range.
 -One cup of high fiber cereal. Be sure to couple this with at least 6 ounces of fluid to avoid constipation.
  -One ounce of almonds ( about 25 ).
  -12-15 grapes ( freeze grapes for sweeter taste and more appealing texture for tactile sensitive kids).
  -Berries mixed with one serving of yogurt.
  -Two ounce serving of tuna, chicken or salmon. Extra protein is a great way to ward off the afternoon fatigue so frequently seen in our kids.
  -12 mini pretzels with a tablespoon of almond butter.
  -10 multi grain crackers with a tablespoon of light ricotta cheese.
  -Three cups of air popped popcorn ( you can make this more interesting with very few added calories by adding unsweetened cocoa powder).
  -Two small oranges and a small handful of walnuts.
  -Vita top chocolate muffin tops. These are a huge hit with the kids as they have a great chocolate taste. They also have the added benefit of 9 grams of fiber.

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