TIP of the WEEK: 'Tis the Season

Here we are in June, the season of proms, graduations, and weddings--at least for typical families. For those among us who have children with different needs it can be a season of grief, guilt, and resentment. Many are watching kids grow and leave home to start their lives and get ready for everything that we have hopefully prepared them for. This is not the case for parents of children with PWS. Your kids are not taking that pivotal step into adulthood, they are not leaving home to move into dorms or to start a family.

Our kids will likely always require supervision. We are also facing the fact that full independence is not a probability. This realization is never as daunting as it is when you see kids in their age group meeting these milestones as they embark on the cusp of adulthood. Every milestone before this time has been delayed. It did happen; just not at the typical age. These particular milestones however, may never be met and that realization hits so hard. As with everything your child has experienced, it is all in how you look at it. Maybe your child won't go away to college--but they will have the opportunity to take college courses. They will have their first job, their first paycheck, boyfriends and girlfriends, and certainly increased independence and adult worthy experiences. It may be "different" but different is still worth celebrating, still important, still joyous and paramount to their growth.

And if you must compare your child to their typical peers then compare the really good stuff. The never ending optimism your kids have, the patience and tolerance for every single person on earth, the unconditional and all encompassing love they have and will always have for you, their parents. You can't say that for a typical young adult! This can be a time of turmoil and if those feelings come up, let them in, acknowledge them and then let them go. Your child is exactly where they are supposed to be- be proud.

Submitted by:
Patrice Carroll
Manager PWS Services

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TIP of the WEEK: Fighting the Fight

In the final week of PWS awareness month I have been thinking ahead to the possibilities that this new generation will have but am distracted by the current state of insurance claims being cast aside, accommodations for a fair education being refuted and needed in-home services being rescinded. It confounds me how we are still fighting this battle and then I realized why- because they don't know our kids. That's all. If they knew them they would love, admire and fight for them the way that we do. They would not give indirect answers denying their necessary accommodations to get a fair education. They would not use their antiquated laws to refuse our kids the support that they need in adulthood, and they would not reject scientifically proven medications because a simple modification to their insurance policy would just be too overwhelming for them to manage. If they knew our kids they would make the changes, find the loopholes, fight the system. But they don't know them so they don't bother and that is the greatest injustice I can think of; to blindly turn away.

We are not asking to give people with PWS a great advantage, simply to give them what is needed to be safe, healthy individuals with the same rights as every other citizen. That is not too much to ask and yet we are still fighting. So what do we do? We make it personal, because it is. We create teams of people who know and love our children to make the calls, insist on the meetings, reject plans that are subpar, that don't stop even when the odds look incredibly stacked against you. It may take an army but guess what? We have one. May ends in a few days but our fight doesn't and we have what it takes to make the changes that will allow our kids to get the services that they deserve. I'm in. Are you?

Submitted by:
Patrice Carroll
Manager PWS Services

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TIP of the WEEK: Safe Summer Fun

With the unofficial start to summer happening this weekend it's a good time to talk about all of the summer activities that we love to participate in. Cookouts, picnics , family get togethers seem to happen every weekend and all of them are completely focused on the F word. That's food, of course. If your child has a particularly high food seeking drive you may choose to stay away from these activities or you can try these tips that may lessen the stress of our favorite summer pastimes.

1. Arrive after lunch has been served. It may be extremely difficult to remove your child from the get together before the meal is served but arriving after allows you the social interaction with the group without the stress of explaining to everyone there why one more cookie really is a big deal.

2. Don't go it alone. Bring at least one other person who knows your child if food is going to be out and available for the whole event. This will allow you to have at least some time "off duty" from monitoring food intake. Remember though, always assign one person to watch your child. When everyone is watching, no one is watching.

3. Have the party at your house. You have more control over the food and where it is served and the environment is familiar to your child making it less stressful.


Whatever you decide to do be sure that it is what's right for you and your family. If you think your child can safely attend, then go, but if you are unsure then stay home. There is no shame in knowing what your child can handle. Not every friend or family member will understand this but that is not your main concern. If large get togethers are too much then plan small events with close friends and immediate family. Summers can be a wonderful time filled with activities that everyone can enjoy. Trust your gut and do what feels right for you and your family.

Submitted by:
Patrice Carroll
Manager of PWS Services

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“I wonder what it would be like to live in a world where it was always June.” 

~L.M. Montgomery

TIP of the WEEK: Sneaking in Exercise

One of the best ways to get your child to exercise is to not call it exercise! Getting active and having fun together doesn't have to be a chore and once the habit of being active is formed it will be hard to break. Here are some ideas for exercise that you can sneak in without anyone knowing it's good for them!

• 1. Have an outdoor scavenger hunt. This can be on a nature walk, the beach or just during a neighborhood walk. Kids will be more likely to keep moving if they are distracted with the hunt.
   
• 2. Get competitive. We have had great success with the use of pedometers. The person with the most steps at the end of the week is the winner. Their competitive nature kicks in and over time we found that even the prize for the winner was unnecessary. They simply wanted to be the winner.
   
• 3. Go to a playground. Most towns have community playgrounds and they are highly underused. Don't discount the exercise value of climbing, swinging and many of the upper body building equipment found on playgrounds.
   
• 4. Impromptu games of catch and tag are wonderful ways to get exercise in and have fun at the same time.
   
• 5. Anything that can be turned into a contest; who can get to the mailbox the fastest, who can throw the farthest, who can carry the most books. Literally anything that has a winner will be met with enthusiasm.
   
• 6. Walk for charity. Our kids have such sweet spirits and are typically very willing to help out someone in need. During the nice weather there is some kind of charity walk happening almost weekly.

Whatever you choose to do be sure that you are equally as involved and excited. Your child will model after your attitude towards being active. Standing with a stop watch and telling them to get their exercise in for the day will last about 5 minutes if you're lucky. Exercise can be fun but shhhh, don't call it exercise!

Patrice Carroll
Manager PWS Services

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"Life is not merely to be alive, but to be well."

 ~Marcus Valerius Martial

TIP of the WEEK: Taking Care of the Caregiver

For the first week of PWS awareness month I would like to address the needs and challenges of professionals working with the PWS population. Personally I have never worked with a population that was more profoundly rewarding and also at times formidable and confounding; but always worth it. I have found that each time I have felt defeated or to the brink of throwing in the towel, I myself have not been at baseline. My state of peace and self awareness has had a direct impact on the situation at hand. When I was able to regroup and look objectively it was clear that my state of being had a direct effect on the outcome. It takes a special and dedicated person to work with people with PWS and on this first week of PWS awareness month I want to thank you for everything that you do everyday for our children and adults. Here are some ways to keep your approach positive and still have some energy left for you at the end of the day.

• 1. Take a break from technology everyday. I am one of the biggest offenders of being glued to my phone and email but taking a break from the things that we plug into allows our minds and souls to recharge. Putting down the phone gives us a chance to make face to face connections instead of just screen to screen.
   
• 2. When you're at work, be at work and when you're at home, be at home. Being in the moment is being the best of you. Practice mindfulness before and after each shift to help you make that transition.
   
• 3. Take time off. Use your vacation time and be off when you are off. Try to avoid reading email or checking in when you are not working.
   
• 4. Be as kind to yourself as you are to the people that you care for. Use the same level of patience and encouragement for yourself  as you do for others.
   
• 5. Practice self care everyday. Eat well, get outside, do leisure activities that make you happy.

As rewarding as our jobs are they are equally as demanding and taking care of yourself is crucial to your overall success both at work and at home. Since I know that you do not hear these words enough- thank you! You are coaches, friends, surrogate parents, cheerleaders, nurses, therapists, referees, and confidants all in the matter of an 8 hour shift. If you have any doubt look at the faces of the kids when you come back after being off for a few days and you will know without question how loved you are. You are an essential part of their lives and the work that you are doing now will matter for a lifetime. So take good care of yourselves and keep up the good work!

Submitted by:
Patrice Carroll
Manager of PWS Services

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“Gentleness towards self and others makes life a little lighter.” 

~Deborah Day
 

TIP of the WEEK: Visual Schedules

Students with PWS thrive on a structured environment as well as a structured schedule.  Some students benefit from visual schedules that offer both dense reinforcement and a high level of intensity.  Boardmaker is an essential tool that provides visuals in order to support students in obtaining individualized schedules, which meet their personalized needs.  The Boardmaker program offers teachers, therapists and parents, a tool to support language and literacy goals with assistance from adaptive learning materials.   Boardmaker helps to compile a rather complex structured daily schedule into a step by step clear plan.  This allows the students an opportunity to remain in the moment with a clear focus on the task at hand.

Here is an example of a student’s visual schedule:

The front cover identifies the amount of work to be completed, in the specified activity and what the 5 minute incentive will be.

The student/teacher decides together the amount of work the student is to complete before obtaining the incentive.  It could be anywhere from 1-5 problems or 5-15 minutes of work.  If the task is in minutes, the timer is set and started.














The students are able to quickly change the activity/incentive with the help of Velcro adhesives.

Submitted by:
Brittni Taylor
Assistant Principal

TIP of the WEEK: Living with Anxiety

Anxiety and PWS go hand in hand. Our kids live every day battling anxiety that ranges from mild to crippling depending on the situation. Even the most anxious child in the most stress provoking situation can rise above and face their fears.

1. Set an example. Kid do what we do. They watch everything and learn by modeling. If we avoid stressful situations or cope with anxiety by isolating or acting inappropriately, so will they. If our kids see us facing our fears and coping with stress with strength and confidence they will have template to follow.

2. Praise bravery. Every time you witness your child being brave, even in the smallest way, point it out and praise, praise, praise. Let your child overhear you talking about them facing a challenging situation because too often they overhear not so nice things being said. Remind them of how brave they were the next time a similar situation arises.

3. Avoid making excuses for poor behavior ( in front of them). We know that there will be bad days but don't let your child hear you say that their behavior was a result of anxiety/PWS/lack of internal control, whatever the cause may have been. Making excuses for the behavior allows your child to relinquish all accountability.

4. Encourage communication. Talking about anxiety, what triggers it for your  child, how it makes him or her feel, and what lessens it are all ways to find the pattern, start to pinpoint where and when it starts and most importantly, how to help them relax in the moment.

5. Establish a nighttime routine. Bedtime is often difficult because it is one of the biggest transitions of the day and forces the child to relinquish all control. At least one hour before bed turn off tv's and computers. Read a book to young children, flip through magazines with older kids and teens. The goal is to set a calm tone that allows them to transition from busy to still more easily.

Regardless of your child's level of anxiety, showing them by example and fostering positive behaviors will eventually become habit for them ( and you) and will allow him or her to live with having anxiety instead of anxiety ruling their lives.

Submitted by:
Patrice Carroll
Manager of PWS Services


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“Sorrow looks back, Worry looks around, Faith looks up”

 ~Ralph Waldo Emerson

TIP of the WEEK: What I Know

For the past 16 years I have worked almost exclusively with people diagnosed with PWS. It has been the joy of my professional life and I would not want to be doing anything else. I have learned a thing or two over the years. Here are the top ten things that I would like parents to know.

1. The very best ideas come when we are about to give up. I can't tell you how creative and innovative a person can become when the only alternative is to fail. I have seen this countless times and it never fails to astound me how many ideas come from the drive not to give up on someone.

2. People with PWS can and do make the best of everything. Faced with innumerable odds they thrive and force everyone around them to step up and notice their contagious love of life despite so very many challenges.

3. It only takes one person to believe in your child. Keep that person in your life.

4. If you can't throw it in the washing machine on hot, it's never going to get clean so don't buy it. Keep it simple. Don't try to impress anyone. Any extra time that you have should be spent on yourself not on your laundry/house/car/nosey neighbors or in-laws. Do the minimum on unimportant tasks; you'll need all the energy you can get.

5. When you're in the car alone listen to the music that you loved in high school; Loudly. This may be your only chance that day to unwind. Use the time wisely.

6. Invest in a really good carpet cleaner. Just trust me on this one.

7. You can do this. There will be days that knock you down and you will not want to get up. But you will and it will be worth it.

8. The paid people in your child's life care. They do. They will make mistakes and will never love your child the way that you do but they will love your child. Give them the benefit of the doubt and allow second chances. The vast majority of caregivers and health professionals are in their jobs because they are compassionate and giving people. Understand that they come from a place of healing and caring when you interact with them. Success is measured by your child's happiness so know that they want the exact same thing that you do but may approach it differently.

9. Experts can be wrong. Trust your gut. I have learned just as much from a 10 minute conversation with a child with PWS as I have from professionals who have spent a lifetime working with them. Both experiences are just as valuable. Be an open minded and flexible advocate. Listen to everything and use only what works for you.

10. Love your child for who they are, not what you want them or wish for them to be. Will they meet all of the typical milestones? Probably. Will they graduate from school and hold down a job? Most likely. Will they ever stop picking/yelling/being aggressive/being rigid? Maybe and maybe not. Will they have a happy and fulfilled life? Yes. They will. They will find what brings them joy and they will have relationships and interests that are uniquely theirs. I don't profess to know everything but I do know that their life will be worth celebrating and you will survive the journey and in the end will have given the world a person who made everyone around them better just for knowing them.

Submitted by:
Patrice Carroll
Manager of PWS Services

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TIP of the WEEK: The PWS Bladder

Many of our kids and adults have issues with urinary incontinence. This is often seen as behavioral but the truth is, although it can be, it seldom is something that they have control over. The typical person feels the need to urinate when the bladder is half full (about one cup) and has extreme urgency when the bladder is near full (about 2 cups). The person with PWS does not feel that initial half full urge to urinate and by the time they do feel the need to go the bladder is nearly full. This means that by the time they feel the urge it is almost too late. You know this if you have ever been stuck in traffic with a person with PWS; Once they say they have to go, you have minutes, on the generous side, to get to a bathroom. So here is what you can do:

• 1. Plan bathroom breaks at least every hour whether they have the urge to go or not.
   
• 2. The flow of a person with PWS is different as well and they should be encouraged to wait several seconds before stepping away from the toilet. It may take up to 30 seconds for the flow of urine to start.
   
• 3. Encourage drinking during the day and less so in the evening. Overnight incontinence is extremely common and restricting fluids after dinner will help with this.
   
• 4. Avoid shaming of any kind. This will only foster sneaking behavior around incontinence; Hiding wet underclothes and pants, unwanted behaviors due to embarrassment or guilt etc...

Don't forget that people with PWS are more prone to hyper hydration than a non PWS person. Hyper hydration can be as or more dangerous than dehydration. Always check with your child's doctor as to how much fluid your child should drink each day.

Patrice Carroll
Manager of PWS Services

TIP of the WEEK: Accepting Change

Let's face it , change is hard for everyone. We all feel safer and more secure when life is predictable and we get to see the road ahead clearly. Unfortunately that's not the way life works and for our kids this can be the source of endless stress and anxiety. No one can predict each day but there are some things that we can do to make accepting change a little easier.

1. Talk about it. If there is the possibility of disappointment talk to your son or daughter about how they might handle a change in the plans. Don't do this for every event but if the situation is not set in stone and for some reason they found about about it, let them express their feelings and practice how to talk about feeling let down or angry. Nobody wants to look forward to something and have it not happen and these are learning opportunities to practice appropriate responses to hard feelings.

2. Plan mindful changes in their schedule. If you have done the same thing every Tuesday afternoon for the past 6 months plan a small change to that schedule and use it as a teachable moment.

3. People fear change because it makes us feel powerless. As we mature emotionally we begin to accept change as we feel more internal and external power over our environment. Allow your child choice when change occurs. Allow them to feel more in control when the very structure that makes them feel in control is taken away. If something in their life is changing, big or small, give them options as to how they want to proceed. This can be as simple as choosing their new bedroom if you are moving or picking out new school supplies if their favorite teacher is leaving.

Learning to face change bravely is a sophisticated coping skill that comes with time and practice. Help them to get there by validating and teaching them that change does not equal powerlessness.

Submitted by:
Patrice Carroll
Manager of PWS Services

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“Your life does not get better by chance, it gets better by change.”

 ~Jim Rohn

TIP of the WEEK: Good Dental Hygiene

Starting and maintaining proper oral hygiene is essential for your child's health. Rumination, thick and sticky saliva and sensory issues all lead to the possibility of poor dental hygiene. Cavities, gingivitis, and other gum disease have a direct negative effect on overall health especially in older individuals. Teaching and maintaining good oral habits at a young age will have lasting and positive results and will directly impact your child's good health. Here are some tips for fostering good dental habits:

• 1. If your child appears fearful or especially resistant to tooth brushing consider getting an evaluation from an OT to address sensory needs. The sound of running water, the temperature of the water, the feeling of bristles in their mouth all may be sensory overload and can be successfully addressed.
   
• 2. Establish and stick to a routine. For several years you may need to brush your child's teeth until you feel that they have the stamina and coordination to do so for themselves. Even after the busiest of days or the most hectic mornings, don't skip this routine. Skipping because it is easier just sends the message that this particular task isn't that important. This is the opposite of what you are trying to teach.
   
• 3. If your child ruminates try sugar free gum after meals or sour candy spray. Both can sometimes discourage rumination because it is more rewarding to have the taste of gum or candy in their mouths.
   
• 4. Let your child make their own toothpaste. There are loads of simple recipes online and your son or daughter may be more likely to use it if they make it themselves.

Whatever the issue, good dental hygiene is crucial to overall good health and habits need to start early. We would love to hear your suggestions for making this sometimes grueling daily chore happen!

Submitted by:
Patrice Carroll
Manager of PWS Services

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TIP of the WEEK: Making Friends

The number one issue that we hear about from families is their child's lack of friends and meaningful relationships outside of family. This is a great challenge for our kids, especially for those who are often placed in special needs classrooms with children who lack social skills or who shy away from social interaction. Some kids can go for long stretches at a time only interacting with family members or with classmates who cannot reciprocate socially. Here are some ideas that can help:

1. Have social skill building time written into your child's IEP. This can mean time out of their classroom as an integrated member of a mainstream classroom or activity at least one time per day. Use your child's strengths and have them join a classroom of typical children for a portion of each day. Having role models for appropriate behavior and wanting to fit in are the best ways of encouraging productive social skills.

2. You need to be a friend to have a friend. This age old saying is still very much true. Due to the tendency to be self interested it can be difficult to teach the important lessons like generosity, patience and tolerance but with consistency these skills can be learned.

3. Let them get hurt a little. Avoid over protecting their feelings to the point where other kids are afraid to be around them for fear of being constantly corrected. Kids might unintentionally (or intentionally) say something hurtful but let your child be the one to express his or her feelings to their peers.

4. Let your kids pick their friends. You won't like all of their choices but isn't that true for every child? Taking risks, learning through experience and being let down are what teaches us life's most important lessons. A child who is always kept safe and whose choices are made for him or her is a child that will not grow.

5. Ask for help at first. Your child may not be included initially so ask the other moms to have their kids spend time with your son or daughter. It won't be long until they see that despite your child's disability, they are actually pretty fun to hang out with.

The bottom line is that we often separate our kids with very good reason but in order to make and keep friends we need to let go just a little tiny bit. The rewards will be endless.

Submitted by:
Patrice Carroll
Manager of PWS Services

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"Friendship is a sheltering tree." 

~Samuel Taylor Coleridge

TIP of the WEEK: Making Doctors Visits Manageable

Going to the doctors does not have to be a stressful event if a few things are taken into consideration beforehand:

• 1. If fasting labs are the beginning of your day, or heaven forbid your afternoon, reassure your child that they will get all of their daily calories, just at a different time. This will make the skipped meal a little easier if they know that they will still get their calories, just later than usual.
• 2. Doctors talk fast and sometimes assume that we know more than we do. Never be afraid to ask for clarification. When possible bring someone else along with you and when that is not possible be sure to bring a pen and paper along. You will not remember everything that was said no matter how hard you try.
• 3. If this is a new doctor ask for a double appointment. You will need this time to go over the printed PWS medical information from PWSAUSA. If you just hand it to them, they will likely not read it thoroughly.
• 4. If you are scheduling an appointment for a non emergency, try for early Monday mornings as they tend to be the least busiest time for doctors offices with less wait time and the ability for a longer, less rushed appointment.
• 5. Plan something fun for after the appointment if your child doesn't like going to the doctor. Having something to look forward to is the best way to get through something unpleasant.
• 6. If your child is fearful or adamantly opposes going to see their doctor, consider switching. Pediatricians should be able to provide a calm and safe atmosphere and if this isn't happening then it might be time to see someone else.
• 7. Call ahead and ask that all treats like candy bowls or lollipops be removed while you are there. To be safe do this before every appointment.
• 8. Finally, as your child ages let them participate in medical decisions and discussions and they will be better advocates for themselves in adulthood.

Patrice Carroll
Manager PWS Services

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TIP of the WEEK: Teaching Vocational Skills

The framework for building vocational skills starts at a very early age. The less you do for your child early on the more independent and adaptable they will be later in life when it is time to begin working. Children who are accustomed to pushing their limits, problem solving and taking accountability will be far more successful in the workforce than those who are used to having things done for them or being allowed to blame others for their actions. Many skills needed to be a great employee can be taught early on:

• 1. Teach responsibility. Be sure that your child has chores that others rely on to be done. Simple chores can start as early as three or four years old. Increase complexity as the child grows.

• 2. Never blame other people if your child displays negative behavior, at least not in front of your child. Children with PWS have so much to contend with and sometimes the anxiety and over stimulation is simply too much and a melt down or other behavior is inevitable. Mistakes will be made by other people involved in your child's life. This is unavoidable. Regardless of the situation always convey the message to your child that acting in an inappropriate way is never okay and their actions are always their choice. Allowing your child to blame their actions on another persons mistake is a set up for extremely difficult teenage and adult years. Even if you know that the situation could have been avoided the message to your child needs to be clear and consistent.

• 3. Do not avoid using the word no. Many families report to us upon intake that their child reacts strongly to the word no so they avoid using it at all costs. This is fine for a residential setting. We are used to skirting this word but it is unrealistic in the community, especially at a work setting. Employers are not going to be sensitive to this and employment will be short lived if a behavior occurs every time your child is asked not to do something.

• 4. Many kids with PWS do not have strong math skills and for the most part this will not get in their way. However, money skills are an important skill to have. Teaching the value of money will serve them well even if they will not be able to handle money independently.

It is so tempting to keep our kids in a bubble because we want them to be safe and protected and let's face it, we want to keep our sanity but pushing them, challenging their limits and taking risks will serve them for a lifetime.


Patrice Carroll
Manager PWS Services

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TIP of the WEEK: Loving Someone Rare

Your child is not their IQ score or their new diagnosis from a recent psych eval. She is not how many steps she can take at the age that some other children are when they take their first steps. He is not his tantrums or his scars from picking. Your child is not a problem or something to be fixed.

She will encounter love and joy and friendship and she will also meet those who are mean and unfair and ignorant. He will soon find out that some days are great and other days are really, really bad. And that's okay. Not everyone will like him and others will love him as if he was their own. Teach them to see the good in every day, even on the worst days. Teach him by example. Teach her by being strong for her but not by solving all of her problems for this will only teach her to be dependent and to look to others when she has the ability to do for herself.

You have a child that not everyone will understand and you will fight more battles than you can count but it will be worth every step because in the end you will have a confident and capable child who will most certainly exceed all of your expectations providing that you resist the temptation of putting limits on them in the name of protecting them. Today we celebrate rare disease day and it is a good reminder to embrace the differences and to learn from the unique, quirky and undeniable spark that comes from those who live and love in a way that makes the rest of us seem downright boring!

Patrice Carroll
Manager of PWS Services

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TIP of the WEEK: Focusing in the Classroom

Getting and keeping the attention of a child with PWS in class can be a difficult task but there are ways to engage and help to keep them focused.

1. Whisper. My personal favorite. If your child is yelling, crying or having a tantrum- whisper. They will often be so intrigued by what you are saying that they will stop and focus on you.

2. Do something unexpected. Flip the lights, drop a book, start to sing or clap. This will distract them long enough to stop the behavior and get their attention back on you.

3. Have a signal that means it is time to pay attention. At Latham School we have the kids raise their hands. When everyone's hand is up we know that everyone is ready to listen. The kids typically don't want to be the last one with their hand up so this works very well.

4. Avoid lecture style teaching plans. It is very difficult for kids to pay attention and stay engaged if they are just being asked to sit still and listen. The curriculum should be full of plans that require movement and many different physically active activities.

5. Take breaks. Lots of them. Even if it is a 60 second break to stretch and move around, this will do wonders for their attention.

6. Use bright colors and alerting sounds. If music is used choose music that has more than 60 beats per minute, otherwise you will have very sleepy kids on your hands.

The most effective method for getting and keeping a kids attention is to make the classroom fun and somewhere that they look forward to going to everyday. Use prizes, praise, anything that will get the point across that they are liked and that you also look forward to seeing and teaching them everyday.

Patrice Carroll
Manager PWS Services

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TIP of the WEEK: The Art and Science of a Good Nights Sleep

Everyone needs a good nights sleep. So often we hear from parents of children with PWS that their child struggles with sleep issues. Whether they struggle to fall asleep, wake easily, too often throughout the night or too early in the morning, at some point most kids with PWS will have sleep issues. First, a sleep study must be a priority if you are concerned about sleep difficulties. Sleep apnea is a serious condition and should be addressed sooner rather than later. If sleep apnea is ruled out then the next step is to look at the environment both, physical and emotional.

Your body causes stress hormones when you are feeling anxious or are feeling as though you need to be on alert for whatever reason. These stress hormones naturally keep you awake. Find something that soothes your child; an item like a teddy bear or blanket, quiet music, a favorite story- really anything that will take away those feelings of anxiety and turn off the brain's automatic reaction to stress.

Everyone is different. Some will be calmed by certain smells, others agitated by the exact same scent. Sensory issues play a very important part in the bodies ability to calm itself enough to allow for a restful sleep.

 "Is it too cold?"
 "Is it too loud?"
"Are their pajamas the wrong material?"
"Are they feeling rested enough to let their bodies settle?"

Lack of physical exercise or too much exercise right before bed can adversely effect sleep cycles. Some kids need total darkness, others need night lights or hall lights on. These preferences can change over time. The key is to find what works for your child and stick to it. If you notice that your child's behavior has recently changed for the worse, take a look at their sleep patterns. Like everyone else, a bad nights sleep can have a direct effect on mood and behavior. Establishing a quiet and soothing night time routine can do wonders for everyone's sanity!

Submitted by:
Patrice Carroll
Manager of PWS Services

Related Posts:
Getting a Good Nights Sleep
Sensory Overload
Nights at Latham

"A ruffled mind makes a restless pillow."

 ~Charlotte Brontë

TIP of the WEEK: Getting Through a Hospital Trip

Whether you are there for a test, an emergency or for a longer stay, a trip to the hospital can be a stressful event for everyone involved. For kids who may be intentionally trying to get to the hospital to get more food or food that's different from their typical menu, it is important to make arrangements to bring in your own food. Bringing food from home for each meal and snack will eliminate the secondary gain of food acquisition during a hospital stay. If your child requires a test that calls for meals to be skipped, assure them that they will get their lost calories once the test is over. This will help to alleviate stress associated with missed meals. Insist that your medical staff become familiar with the medical alert materials from PWSAUSA, even if it means that you need to read the most pertinent information to them to be sure that they have heard the most critical parts.

Children typically react negatively to a trip to the hospital because they fear that they will miss something that they would normally get if they were home. Assuring your child that once back at home they will return to their typical routine will help to get them through the temporary change.

Hospital visits can be stressful but remembering to keep their routine as close to normal as possible, keeping your stress and fear hidden from them and always reaching out for support if you feel that your medical staff is not fully educated on PWS will help make the visit go a little smoother.

Submitted by:
Patrice Carroll
Manager of PWS Services

Related Posts:
Preparing for the Hospital
Going to the Doctor
We Do Not Walk Alone

"Determination in spite of the challenge makes us stronger.”
 ~Ellen J. Barrier

TIP of the WEEK: Beating the Winter Blues

The winter months, especially post holiday, can be a difficult time for all of us but for a child or adult with PWS the boredom and isolation of winter can be grueling. Less sunlight, cold weather and the lack of special events such as holidays and get togethers keeps us inside and less social and this can lead to boredom at best and seasonal depression at worst. Here are some ways to beat the winter blahs:

• Plan at least one social event between February and March. This can be anything from an extended family dinner, a basement dance party for the kids or any get together that requires some planning and a change in the day to day routine. Let your child help in the planning and use a calendar to count down the days. This gives them and you something to focus on and look forward to.

 

• Make a winter reading list. If your child can read encourage them to do so often and make this a part of their daily routine. If your child can't read, use audio books. These can be downloaded free through your local public library. Reading to your child is also an option but audio books will allow your child to independently spend their downtime. Avoid activities that require you to be directly involved all of the time because doing so teaches your child to depend on others for their entertainment and this is unrealistic especially as they get older. If your child is careful with books then your public library is a great option. If they are not then online stores such as Amazon have very inexpensive used books to purchase.

• Winter is a great time to do indoor projects like redecorating. Get your child involved in redesigning their bedroom or play area. Go online, pick themes and plan. The idea is to get them invested and interested in making their room their own and the project itself gives you and them something to break the monotony.

 

• Winter is a great time to plan your spring activities such as gardening. Use this time to plan, order seeds, start seedlings and design your spring garden. Kids and adults with PWS are typically very good at this kind of a project because it requires a concrete and spatial thought process, something they are most often quite good at.

The bottom line is to create light and hope during a time of the year that many struggle through. Plan activities. Use books instead of tv as much as you can as this will allow for greater use of their imagination and less time to zone out. Plan fun indoor activities that everyone can look forward to. And when the temperature isn't too unbearably cold, go outside! Winter is a beautiful time to explore nature and participate in outdoor activities.

We would love to hear some of your ideas for beating the winter blues...

Submitted by:
Patrice Carroll
Manager of PWS Services

Related Posts:
Any Given February Morning 
Getting Back into a Routine
Musings of a Child Care Supervisor

"When you pay attention to boredom, it gets unbelievably interesting."

~Jon Kabat-Zinn

When you pay attention to boredom it gets unbelievably interesting.
Jon Kabat-Zinn
Read more at http://www.brainyquote.com/quotes/keywords/boredom_2.html#tFhsoUs86S73K4hR.99

TIP of the WEEK: Getting Back into a Routine

Getting back into a routine after the holidays is the best way to move your family away from the chaos of the last two months and get back to some semblance of normalcy. Here are some ways to help you get back on track.

Be realistic. It doesn't matter if all of the other families that you know have the next three years mapped out in 15 minute increments (trust me, they don't). You know your family and what makes sense for them. If your routine is written down and includes what every family member is doing every day, great. If your schedule only includes what your child with PWS is doing roughly everyday, that's fine too. It is what works for you, not what other people tell you works.

Make a "to do" list. Write down what really needs to happen that day or that week and prioritize it. Having a mental list is overwhelming and you will only feel defeated when you ultimately forget half of the list. You need food for meals, bills need to be paid and it is always good to have an idea of where every family member is at any given time. After that most things can move to a lesser priority. Check off when you complete each task on your list so you can see what you have accomplished. We spend so much time running from one thing to the next we often don't stop and acknowledge what we have done.

Don't over estimate your energy level. You have a lot to do every single day. If you over-stretch you will not be your best self and that isn't good for anyone.

If your routine fails, don't give up. Tweak your routine until you get it right. This may take a number of tries but you will find something that works.

Most importantly, take time for yourself. This is so very important and the benefits are long lasting.
Create a routine that works for you and your family and change it as needed. A well organized and pre-planned schedule will help the whole family stay on track. Don't forget to delegate tasks to older kids to give yourself a break. You've done a lot for your family, let them start to help you.
Take deep breathes and try to find the humor in every day. There's plenty of it!

Submitted by:
Patrice Carroll
Manager of PWS Services

Related Posts:
Daily Schedules
Getting Out of My Own Way
Useful Tips for Managing Stress and Anxiety

"Success is the sum of small efforts, repeated day in and day out." 

~Robert Collier