101 Prader-Willi Syndrome Tips

101 Prader-Willi Syndrome tips provides you with an effective approach to dealing with PWS.  Read tips provided by parents of children with PWS, ‘recommend’ your favourite tips and implement the top recommended tips.  If you have your own tip that you would like to see listed on this page, please email us with your name and the tip at pwstips@fpwr.ca

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Anticipation Causes Problems

by: Cindy Armstrong

Do not tell your child about events before they happen – the anticipation is too great.

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Never Raise Your Voice

by: Cindy Armstrong

Never raise our voice – it just makes the argument worse.  You have to keep calm – even when you want to SCREAM!

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Never Reward with Food

by: Cindy Armstrong

Never reward with food.

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Exercise

by: Cindy Armstrong

Keep exercise a big part of every day.

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It’s Over When It’s Over

by: Cindy Armstrong

Never bring up an issue when it is over.

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Plan Meals in Advance

by: Cindy Armstrong

Plan meals in advance.

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Engage in Sports

by: Anne-Marie Blais

Play some sport with your child.  Even if your child can’t participate fully, he will enjoy it and it will give him the love of sports.

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Change One Things At A Time

by: Anne-Marie Blais

Change one thing at a time on your way to eating healthy ( eliminate fast food, reduce salt, reduce sugar, …).

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Listen to your Heart

by: Anne-Marie Blais

Listen to your heart and follow your instincts.  Don’t always simply follow doctors orders.  Make our own opinions about the new prader-willi syndome information.

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Listen to Your Child

by: Anne-Marie Blais

Listen to your child even if they talk a lot.  Listen to what your child has to say.

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Celebrate your Child’s Successes

by: Anne-Marie Blaise

Be happy of your child’s successes and encourage them a lot.  It will make them perform more.

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Treat your Child as Normal

by: Anne-Marie Blaise

Treat your child as a normal child he will perform at his own rhythm

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Sing to your Children

by: Anne-Marie Blaise

Sing songs to your children, it will catch their attention

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Be a Clown

by: Anne-Marie Blaise

Be a clown for your kid it will amuse him even if he doesn’t respond he will enjoy it

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Stimulate your Child

by: Anne-Marie Blais

Stimulate your child all the time

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Preinstruct!!!!

by: Joanne Taylor

Preinstruct, preinstruct, preinstruct!!!!

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Acting out Scenes

by: Joanne Taylor

We have worked on “sessions” with Lauren since she was three years old. First we identify a skill we want Lauren to learn – example – not eat food that is found on the ground.  We would then have sisters/brothers act out exaggerated scenes for Lauren to observe.  i.e.: “Yuck, look at this raisin on the floor.  It is dirty.  I am going to put it in the garbage.  It is full of germs.”  Each day Lauren would observe one or two of these sessions.  It could be done by siblings, friends, kids at school etc.

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Eat Slowly

by: Joanne Taylor

When Lauren was two, she would eat quite quickly – so- we would pull her chair back from the table, verbally tell her to eat slowly, wait for a bit, then push her back in.  In no time at all, all we would need to say to her was “If you eat slowly, you get to stay at the table” and she would slow down.  Now it isn’t an issue.

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Get a File at the Hospital

by: Joanne Taylor

After speaking to nurse after nurse and doctor after doctor in the emergency room – answering all the same questions, “No, she is not vomiting.  No, she does not present a fever.  No, she does not have any pain there…” We now have a file at the hospital so that if we need to go to the emergency room to be seen by a doctor all we have to do is go to the front desk, have them pull up our file, which sends us right up to the pediatrics floor to be seen by a pediatric doctor (they all know us now).  No more waiting in line in emerg – answering questions that don’t apply.

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Don’t Forget the Compost

by: Joanne Taylor

When Lauren was 4 she had e-coli 157.  We discovered that she probably got it from eating something out of the compost.  Don’t forget about composts in the backyard…..

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Use IF/Then Statements

by: Joanne Taylor

If Lauren is exhibiting an undesirable behavior, we don’t ask her to stop; we tell her what we would like to see. Example: If Laruen is picking we might say, “If your hands stay down, the t.v. gets to stay on.”  Or “If you can speak in a quiet voice then you get to stay in the room.”  We can these “If/Then” statements.  If she doesn’t comply we ALWAYS say “I see you’ve chosen for…. (in the cases given, the t.v. to go off” or to leave the room”)

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Praise Specific Actions

by: Joanne Taylor

When praising Lauren for a job well done we don’t say, “Good job”, or “Well done!”-we specifically label what we are pleased with, “I like the way you put your coat on the hook – way to go!”

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Provide Specific Instructions

by: Joanne Taylor

When asking Lauren to do a task it must be specific.  “Clean up your room, please!” is too general.  Instead we say, “Lauren, please put your clothes in the dirty clothes basket, and make your bed.”  Lauren knows exactly what is expected of her and willingly complies!

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Praise Desirable Behaviour

by: Joanne Taylor

Again, when Lauren was around 3 years old she would often take her seatbelt off when we were driving – sometimes for the attention it got her, sometimes because she was mad, sometimes to tick us off!!!  We tried overpowering her to hold it in place, having an adult in the back seat with her etc… but what we realized was she was getting LOTS of attention for a behavior that was undesirable.  So, what we did was…. We put Lauren into her car seat(seatbelt on) – backed down the driveway – then back up the driveway – got out- praised her for keeping her seatbelt on – gave her HUGE amounts of attention – went in the house, read her favorite book etc.. The next day we drove to the end of the street and back – again praise and attention when we got back.  We continued – each day a little farther – within a week we had it conquered!

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See You In The Morning

by: Joanne Taylor

When Lauren was little (3 years old) she would often get up at night – sometimes to wander, sometimes to try to come in our bed.  What we did – that was a HUGE success- was…We bought an alarm clock (that plays music – could even be a radio station).  Since Lauren was, at that time, getting up around 4:00 in the morning, the first night we used it we set it for 3:00 a.m. – yup 3 a.m.!  We then said to Lauren, “See you in the morning when the music comes on”.  The music woke her up and she came in with us.  Over the next two weeks we kept setting it a half hour later (every few days).  Each night we would say the same thing, “See you in the morning when the music comes on”.  After two weeks she never got up before 7:00 a.m.  Although we no longer use the alarm clock, to this day, when we say good night, we always say the same thing, “See you in the…”

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Take Things Day By Day

by: Jack and Amanda Gardner

We take things day by day. Always remembering to enjoy our girls and have fun letting them be kids.

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Participate in Playgroups

by: Jack and Amanda Gardner

Have children involved with playgroups, and getting time with children their own age. It helps to push them in meeting their milestones.

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Keep Active

by: Jack and Amanda Gardner

Keep the whole family active, from skating and sliding in the winter, to hiking and swimming in the summer.

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Find Funding

by: Jack and Amanda Gardner

Look into all possible funding that your child may benefit from, every little bit helps.

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Lots of Praise

by: Jack and Amanda Gardner

Give lots of praise and excitement for every new accomplishment, no matter how small.

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Keep a Regular Schedule

by: Jack and Amanda Gardner

Keep things on a regular schedule. Bedtime, mealtime, and any snacking.

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Baby Signs

by: Jack and Amanda Gardner

Learn baby signs. It has really helped us communicate with our girls early on.

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Contact Other Families

by: Jack and Amanda Gardner

Educate yourself about what to expect throughout the years. Contact with other families is probably the best form of insight.

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Start Early

by: Jack and Amanda Gardner

Have your child involved in OT, PT, and speech therapy as soon as possible.

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Our Children’s Potential

by: Patricia Parker

Think, plan and act from the conviction that every child has the potential, the need and the right to grow up and move away from home (with appropriate supports to ensure health, safety and happiness).

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Get Involved

by: Patricia Parker

Get involved in your local and national PWS organizations.  They offer the most current information, and can be a great source of support and fellowship.

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Sleep Study

by: Patricia Parker

Ask about a sleep study. There are many sleep issues other than sleep apnea that may be present in children and adults with PWS.

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Growth Hormone

by: Patricia Parker

Start early and advocate for access to growth hormone.

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Daily Physical Activity

by: Patricia Parker

Make daily physical activity a part of your family’s culture.

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Red-Yellow-Green Food Plan

by: Patricia Parker

Start early using the principles of the Red-Yellow-Green food plan.

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All your Children are Special

by: Patricia Parker

Remember to focus on the needs and the specialness of your other children.

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Be a Team

by: Patricia Parker

Invest energy, time and love into your relationship with your spouse or partner.

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Build a Network

by: Patricia Parker

Build a network of support for youself, as well as for your child.

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Ask for Help!

by: Patricia Parker

It took me a long time to learn this, but it’s okay.

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Drink Water

by: Anonymous

Encourage your child to drink water. Tell them that they can not start dinner until they have had one cup of water. Or before giving them juice, tell them they must drink water first.

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Cooking Healthy

by: Anonymous

Improve your own eating behaviour and choose healthy foods. Change one thing at a time to eliminate frustration and learn how to cook healthy by reducing sugar and salt.

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Separate Pantry

by: Anonymous

Make a separate room off the kitchen for a large pantry that holds your fridge, freezer and all food items.

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Menu Planning

by: Anonymous

Teach your child early how to menu-plan, grocery shop and cook so they can learn how to be responsible with food and learn about healthy eating.

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Watching Food Waste

by: Anonymous

Always be mindful of where you keep your composts, recycling and garbage.

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Easter Tips

by: Anonymous

For Easter, give gifts of movies or summer fun toys instead of chocolate. Egg hunts can be fun and food-free!

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Special Occasions

by: Anonymous

On special occasions, (e.g. Halloween) substitute food treats with fun treats. Give ten neighbours fun craft-type dollar store items to give your child instead of candy.

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Introducing Food

by: Anonymous

Try not to introduce a food that you may plan to take away at an older age.

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Food as a reward

by: Anonymous

Never ever reward or punish with food!

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Participate in Special Snacks

by: Anonymous

Let your child participate in special snacks related to birthday parties/school activities. It’s easy to make up the extra calories over a few days. People don’t like to feel segregated.

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Never Say No

by: Anonymous

Try to never say ‘no’ when asked for something to eat. Even if you just offer a pickle or veggies, they feel in control and less anxious.

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Cut Up Food

by: Anonymous

Cut up food so it looks like more and encourage your child to eat slowly.

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Locking Food

by: Anonymous

When the time is right for your family, lock any access to food. It will reduce anxiety and stress.

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Telling Time

by: Anonymous

Teach your child how to tell time at an early age, then allocate specific times for meals and snacks – our children love to stick to the schedule, therefore, you may minimize complaints of hunger.

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Lead by Example

by: Anonymous

Knowing early on that food may be an issue.  Lead by example, eat healthy and watch your portions.

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Out of Sight

by: Anonymous

Keep food out of sight. Out of sight, out of mind.

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Small Plates

by: Anonymous

Use small plates and divide meal up so there is room for seconds.

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Frozen Snacks

by: Anonymous

Freeze 0% fat-free yogurt for a cool snack like ice cream.

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Fat Free

by: Anonymous

Just because a package says low fat or fat free…read it closely…watch for high sodium and sugar grams.

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Annual Development Assessments

by: Pauline Cheng and Kham Douangphanchanh

Make sure your child receives annual developmental assessment to ensure that you get a developmental snapshot of their progress.

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Sleep Apnea

by: Pauline Cheng and Kham Douangphanchanh

Check you child’s breathing at night to ensure that they don’t have sleep apnea.  Ask your doctor for a sleep study (even if you don’t want to pursue GH treatment).

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Medic

by: Pauline Cheng and Kham Douangphanchanh

Request a physical therapist with experience with Medic training.

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Gross Motor Skills

by: Pauline Cheng and Kham Douangphanchanh

Access special needs programs for gross motor skill development.

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Eat with Supervision

by: Pauline Cheng and Kham Douangphanchanh

Please do not allow her to eat without supervision, or leave her alone with food. This is a medical issue, not a behavioral one.

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Heavy Objects

by: Pauline Cheng and Kham Douangphanchanh

Encourage your child to lift heavy objects and engage in resistance exercises.

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Daycare

by: Pauline Cheng and Kham Douangphanchanh

Place your toddler in a daycare that will challenge him/her and push them to meet developmental milestones.

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Food Suppliments

by: Pauline Cheng and Kham Douangphanchanh

Supplement your child’s food with EFA, CoQ10, L-Carnitine, Vitamin B12, Creatine, Vitamins and Probiotics.  Do your research and monitor the body blood levels where possible.  Some supplements might do more harm if excess amount build up in the body.

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Teachers can be Great Allies

by: Pauline Cheng and Kham Douangphanchanh

Teachers can be great allies in keeping your child with Prader-Willi Syndrome safe and successful in school, but you’ll need to make sure they have all the knowledge they need to help. Use these suggestions to create an information packet to bring educators up to speed.

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Push Your Child

by: Diane Rogers

Push your child to grow and do and learn and be.  Encourage her to do her best. Acknowledge effort, energy and fun, not results.

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Prader-Willi Syndrome Conferences

by: Diane Rogers

Go to Prader-Willi Syndrome conferences with your child with PWS.  It is amazing being among people who truly understand you and your child.  It is a level of support you will not experience elsewhere.

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Do the Best You Can

by: Diane Rogers

Being the parent of a child with special needs does not come with an instruction manual or a crystal ball.  There are going to be times when you don’t know what is actually going to be the best for your child.    Don’t be too hard on yourself.  Do the best you can do with the information you currently have, and let your higher power look after the rest.

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Happy Parents

by: Diane Rogers

Happy parents help make happy children.  So… you’ve got a child with special needs.  You do not have to be Super Mom or Super Dad every minute of every day.  Take some time for yourself for your needs, hobbies and sanity (especially you moms who are usually too busy looking after everyone else).

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Love Your Child

by: Diane Rogers

Love your child for who she is and encourage her in the activities and hobbies she enjoys, and not the activities at which you wish she excelled.  Now, exercise is a whole other matter.  Exercise is essential, no matter how exhausting an difficult it is.

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Bactroban Ointment

by: Diane Rogers

We have recently learned about Bactroban ointment.  Kate has occasional problems with skin picking.  Recently, she had a sore on her face that she had trouble leaving alone.  It was in an area we couldn’t cover with a bandage, but we were treating it with Polysporin ointment.  After battling the sore for weeks, we learned about Bactroban ointment.  We got a prescription from Kate’s doctor and the sore was healed within days.   We found putting the cream on at night most beneficial and found a huge difference in the sore each morning.  I can’t believe we didn’t know about Bactroban before now!

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Red/Yellow/Green Diet

by: Diane Rogers

Use the Red/Yellow/Green diet.  It is a diet plan that is easy for everyone to understand.  We have found it essential in helping Kate understand her condition and what it is she needs to do to remain healthy.  Kate wouldn’t be as slim and healthy as she is now without having followed this diet.

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Be Consistent

by: Diane Rogers

Be consistent with daily rules, routine and structure.  This reduces stress in your child and makes home life happier.  This is our number one ‘life rule’ to live by.  Being consistent still allows for vacations and special events, but allows the child to know what is expected of him or her.

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Recognize Siblings

by: Pat and Rick Johnson

Recognize and honour the empathy and understanding given by the siblings of people with Prader-Willi Syndrome.

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Social Interaction

by: Pat and Rick Johnson

Give lots of opportunities for social interaction.

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Inclusion

by: Pat and Rick Johnson

Make your child feel included in all family activities.

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Listen

by: Pat and Rick Johnson

Be willing to listen, and really HEAR, even if you have to give a time limit.

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Lock Your Cupboards

by: Pat and Rick Johnson

Lock your cupboards early in life so your child will accept it.

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Yoga Ball

by: Kristin and Damien Simms

Buy a big Yoga ball for home exercise

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Tell Your Family

by: Kristin and Damien Simms

Tell all of your family members as soon as possible so they can help out.

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Physiotherapy

by: Kristin and Damien Simms

Start Physio as early as possible

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Understanding Prader-Willi Syndrome

by: George and Shelley McDonald

Make sure you have a good understanding of Prader-Willi Syndrome.

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Physicians and Dietitians

by: George and Shelley McDonald

Make sure you have a good physician and dietitian who are willing to learn about Prader Willi Syndrome.

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Lots of Love

by: George and Shelley McDonald

Make sure everything is done with lots of love!

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Physical Activity

by: George and Shelley McDonald

Look for ways to engage in physical activity without calling it exercise.

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Your Team Includes Extended Family

by: George and Shelley McDonald

Make sure your extended family has a good understanding of Prader-Willi Syndrome and its related challenges.

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Keep Routine the Same

by: Cindy Armstrong

Keep routine the same

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Add Food Concerns to your Child’s IEP

by: Theresa Strong

Add something like “Mark’s parents must be informed at least 24 hours in advance of any event involving food; parents must be notified immediately if Riden eats any food that was not sent from home.”

Teachers won’t always read all the PWS info you give them, but they do usually review the IEP, and it gives you solid footing when there’s conflict to say “As it states in his IEP, ….”

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