TIP of the WEEK: Creating a Home Sensory Space

Undoubtedly your child has a sensory room somewhere in their school. Sensory rooms are wonderful additions that schools have incorporated and they are also really, really expensive. But they don't have to be. You can create a sensory space in your home with the same positive effects as the pricey ones. Here's how:

1. Find a spot. This can be a corner free of wires and outlets, an unused closet with the door removed, or even a space in their bedroom.

2. Use soft lighting. If you only have the option of strong or fluorescent lighting, purchase light covers that will soften the glare.

3. Paint the walls. Create a soothing mood by painting the walls soft colors like light yellow or green.

4. Add visual tools. Sure you can spend hundreds or thousands on light boards and wave machines or you can get the exact same calming effect by using a string of pink or purple Christmas lights.

5. Create calm. Put pictures on the wall of places they love to visit; places that bring back good memories.

6. Brain breaks. Have something for them to do that encourages positive stimulation. You can find endless ideas for brain breaks online.

7. Tactile tools. Have lots of options for tactile stimulation.  Stress balls, Thera putty and coloring books are all very soothing independent activities.

You know when your child needs a break, an escape, or needs to relax. Having a space with soft lighting, music and activities can not only give your child a place to regroup but can also give you a way to get a few minutes alone while at the same time teaching your child the invaluable skill of self soothing.



Patrice Carroll
Manager of PWS Services

TIP of the WEEK: Facing Big Changes

Graduations, moving, new jobs- these are all major life changes that effect all of us. For those who struggle with even minor transitions, these big events take careful planning.

1. Focus on what will be the same. Find similarities from past experiences to soften the transition and create sameness. If they enjoyed certain aspects of past jobs or places that they lived then focus on what will be similar in the next job or living arrangement.

2. Allow for stress. Make time to wind down, even more than usual. Take frequent breaks in the day and keep expectations low in the beginning. Slowly add tasks and demands when you notice a decrease in anxiety.

3. Be proactive. If you know that this next chapter will bring changes to routines then be ready with new schedules and frequent reinforcers for making it through each step.

I don't think anyone could say it better than our recent graduate, Ayanna. Her words for her fellow students shows us that even the biggest changes can be met with wisdom and grace.

Patrice Carroll
Manager of PWS Services

TIP of the WEEK: We Are Rare

This weekend we celebrate International Rare Disease Day. One day of the year that the spotlight is on those that live with diseases so rare that, in some cases, very little is known about them. But what about the other 364 days of the year? Who is watching, learning, studying, worrying and loving those living with rare diseases? We are. The families, staff, and educators who commit and dedicate our lives to the rare and beautiful people in our lives.

So this Saturday don’t simply celebrate the people in your life living with a rare disease, celebrate yourselves and those equally rare people who support you and your child. Reach out to families who have less support or who are currently in crisis. Educate everyone every chance you get. Look back on the past year and rejoice in the successes, no matter how small, because every step forward is a huge achievement. The world celebrates rare diseases on Saturday 2/28 but for us every day is rare disease day and we wouldn’t have it any other way.





Patrice Carroll
Manager of PWS Services

TIP of the WEEK: Keeping your Cool

It is crucial that we keep our cool during an incident- remain calm, keep distractions down, use a calming tone of voice. It is equally as important, however, to remember these tips after an incident has occurred:

1. Don't judge. Even if the trigger seems trivial to you, something caused your child to become extremely upset. Whether or not you think it warranted a strong reaction is not important. 

2. Remain calm. Your adrenaline is high, you are upset and if the incident was in public you are embarrassed and angry. Don't let those emotions get in the way of the final goal of keeping your child calm and teaching the appropriate tools for preventing this in the future. 

3. Teach. After the incident and recovery time, talk about what happened gently and calmly. What was he or she upset by? What can be done differently in the future?

4. Take time for yourself. You need some recovery time as much as your child does. Take it.

No one wants to see their child melt down but this will inevitably happen. Do what you can to prevent it but know that sometimes even the best plans are not going to prevent a loss of control caused by any number of possible triggers. Allow yourself the time that both you and your child need post incident to regroup and learn from the experience.

Patrice Carroll
Manager of PWS Services

TIP of the WEEK: Caregiver Fatigue

Whether you are a parent, staff person, or teacher there are days that are simply exhausting! Giving everything you have to another person, especially if that person is having a very bad day can take its toll. Here are some things that you can do to survive on the not so good days:

1. Speak up. Let people know how you are feeling. Fatigue, over reacting to small things, frustration and constant worry are all signs that you have had too much. Talk about your feelings openly.

2. Let people help you. If help is offered, accept it. You don't need to do it alone. This will mean that you cannot control every situation and that is ok. Accepting help is not a sign of weakness.

3. Take a break. If you see the signs of burn out seek respite care if you are caring for a family member or schedule a vacation if you are a staff person. A much needed break can make all the difference.

4. Put yourself first. Ok, maybe this is unrealistic all of the time but do put yourself first for at least a few minutes per day. Give yourself small rewards at the end of the day- a hot bath, well hidden chocolate when everyone is in bed, your favorite tv show or anything that takes your mind off of the day.

You are an integral person in the life of our children and in order to give your best you need to be your best.




Patrice Carroll
Manager of PWS Services

TIP of the WEEK: Surviving Meltdowns

Despite all of your efforts and planning there may come a time when an escalated situation becomes out of control. Here are some things to consider if a meltdown goes too far:

1. Don't try to reason with your child about why they shouldn't be upset. It may seem trivial and slight to you but whatever has gotten them upset is very important to them. Invalidating their feelings will only make the situation worse.

2. Avoid eye contact and unless absolutely necessary, don't talk. The difference between a meltdown and a tantrum is that a tantrum is typically an attention seeking tool, a meltdown is a complete loss of control that has to run its course before it ends and will escalate further with additional external stimulis. No amount of talking or reasoning will stop a full blown meltdown and will almost always make it worse.

3. If you are in public then expect a scene. People will stop and stare and judge and there is nothing that you can do about it so as embarrassed as you may be, ignore the audience. They don't know your child and likely have no idea of the syndrome. Some parents have told me that they tell bystanders that their child is autistic because most people are aware of autism and that their presence is making the situation worse. Don't let an audience alter your actions. Take a deep breath and remind yourself that this is a bad situation that will have an end to it.

4. This is their meltdown, not yours. You need to stay calm and strong, joining in the heightened state of anxiety and frustration will most certainly add to your child's already upset state.

5. If your child is at imminent risk of hurting themselves or someone else you may have to hold them. Depending on many factors, including your own or their physical strength, this may not be possible and you may need to call 911. Their safety is your number one concern. There are a number of programs nationwide that teach physical holds. If you are interested or feel that this may be necessary for you I recommend contacting one of these programs and taking a course.

6. A bystander may call the police. It is always helpful to have the police involvement cards available through PWSAUSA handy as these explain PWS succinctly.

7.  After your child calms down they will likely fall asleep. Let them. Their bodies and minds have gone through a lot and this is a necessary crash.

After the incident refrain from judgement or punitive actions. It was a lack of skill that caused the problem, not a conscious decision to misbehave. Think through the events that led up to the incident and determine which skills were lacking and focus in teaching those rather than spending too much time rehashing the event with your child. They will probably not be able to verbalize what caused the disregulation in their emotions and will already feel shamed by acting out. Most importantly try to remember that no matter how bad the situation gets it will end and it is not something that they would have chosen to do if they were thinking clearly.

No one wants to see their child suffer but staying steady and in charge will help move the situation to an end and allow everyone to get back to the good stuff. And there's so much good stuff!




Patrice Carroll
Manager of PWS Services

TIP of the WEEK: Saying Goodbye

Saying goodbye to paid support people is an inevitable reality of our children's lives. There will be teachers, aides, direct care personnel, therapists, and doctors that will touch you and your child's life in spectacular ways and saying goodbye to them will be devastating. Take comfort in knowing that right around the corner there are more wonderful people who will fight for, love, and support your child just as hard as the last person.

Here are some ways to help your child transition from the person who left and help them openly receive the new professional coming into their life:

• Have closure. This can be anything from a one-to-one meeting, a short visit in the community (going to a coffee shop or favorite bookstore) or having a group goodbye.

• Make something special. A card or a short story will allow your child to put down in words what that person meant to him or her. Often times there is regret on the child's part for not expressing to the person who left how much they meant. Writing allows an expression of feelings when verbalizing them may be too difficult.

• Assure your child that the person leaving was not because of anything they did or didn't do.

• Be careful not to make comparisons with the person who left to the new person in your child's life. Most likely, your child will be looking to you for permission to like the new person. Be sure to give that permission openly.

And finally, it may not always be possible for the staff who left to keep in touch so you should avoid making that promise. Saying goodbye is never easy, but your child will come to learn that, when properly handled, it can open the door to more relationships and new friendships.





Patrice Carroll
Manager of PWS Services

TIP of the WEEK: Sensory Tools

Many of my weekly column readers write in asking what sensory tools work best with PWS individuals. There is no easy answer because it is specific to each individual's preference. It also depends on what behavior one is trying to decrease. That being said, here are some ideas for sensory tools and activities that have had great results for different needs:

For the person who picks―all tactile tools including stress balls, sand and water tables, silly putty, bubble wrap, chewlery (these are bracelets and necklaces that are designed to be chewed on), strips of material to shred and therabands. All of these also work well for decreasing agitation and increasing focus.

For daytime fatigue―therabands used under feet so the individuals can bounce; scents that are strong such as citrus or patchouli; and all activities that involve bouncing, jumping or climbing.

Reducing agitation―all activities that require using muscles in a positive way such as lifting objects (not too heavy), sucking thick liquid through a straw, stretching, blowing bubbles or jumping.

Preparing for transitions―counting, coloring, tapping or clapping to a rhythm or rocking.

Winding down―calming scents such as lavender or sandalwood, deep breathing, a warm bath or hand soaks.

It is always recommended to consult an occupational therapist before starting a sensory program. After a consult, you can experiment on what works best for your child. A rich array of sensory techniques can ease many of the typical behaviors seen in PWS as you and your child master long-term coping skills.




Patrice Carroll
Manager of PWS Services

TIP of the WEEK: Harnessing the Power of Social Stories (a guest post)

Our view of the world is a combination of early experiences: successes and failures, memories of trial and error as well as a compilation of how the outside world responds to us and how that makes us feel. For some of us, navigating society is just that: dodging, responding, and then the always tough lessons of “I WON’T DO THAT AGAIN!”.

Many individuals with PWS struggle with cognitive rigidity and cognitive inflexibly, or understanding situations as black and white. For example, I know all the rules, or I do not know any rules, or this situation is really good or this situation is really bad. This kind of thinking can lead to an individual having set ideas about what should happen in a given social situation. Additionally, it can create challenges for an individual to take in and then practice what is learned about how to react during social situations. In all situations we are given tasks or demands to complete to attain a goal. When a task or demand is given and there is a “cognitive mismatch” due to a lagging skill area (such as cognitive flexibility), the result is a behavior.

When an individual with cognitive rigidity has a set idea about a social situation and expectations are not met, it can lead to a socially unacceptable behavior.  Social Stories are useful in avoiding this cognitive mismatch and instrumental in teaching the child what they need to understand in order to attain the goal. Social Stories are effective tools used to help students with PWS understand multistep situations (such as daily schedule, getting on a plane, or morning routines), social situations/social norms and perspectives of others (such as expressing a feeling, saying hello to friends, navigating a triggering event) using a story format. Effective social stories use text and visuals. They are individualized to meet the needs of specific students and situations written from the perspective of the person using them.

Here are tips on using Social Stories effectively:

• Use Social Stories any time your child will be experiencing a new event/routine or situation outside of his or her typical schedule.

• Make the Social Story short and concise.

• Use positive language and refrain from referring to consequences for not following the plan.

Social Stories are used to prepare your child for the unknown or anxiety causing situation. The more they are used the more effective they are.

An example of a social story:

Given their visual nature, Social Stories are a concrete tool that can be used to lower anxiety about any given situation. It is important to always involve the student in the creation of the story by reading and repeating the story and asking the student clarifying questions to ensure they understand.  The active involvement of the student through creation and repetition is instrumental in reinforcing the specific lesson and increasing the individual’s ability to retain and apply knowledge.

 “Tell me and I forget, teach me and I may remember, involve me and I learn.”
~Benjamin Franklin

Submitted by guest authors and Latham clinicians
Gina Sheehan and Lauren Titus

TIP of the WEEK: Hypothermia

Hypothermia and Warning Signs

As many of us face record cold this January, I would like to share about hypothermia and its warning signs:   

Hypothermia is a serious medical emergency that occurs when your body cannot produce heat as quickly as it loses heat. Your nervous system and all internal organs are affected when hypothermia sets in. Hypothermia in those with PWS can set in sooner and be more difficult to diagnose. Because of this, it is imperative that winter time precautions are in place.

The following are symptoms of mild hypothermia for all populations:

• shivering 
• dizziness
• nausea
• slight confusion
• lack of coordination/stumbling
• confusion
• faster breathing
• increased heart rate
• body temperature below 95 degrees

As one’s body temperature drops, signs and symptoms of moderate to severe hypothermia include:

• Shivering, although as hypothermia worsens, shivering stops
• Clumsiness or lack of coordination
• Slurred speech or mumbling
• Confusion and poor decision-making, such as trying to remove warm clothes
• Drowsiness or very low energy
• Lack of concern about one's condition
• Progressive loss of consciousness
• Weak pulse
• Slow, shallow breathing

Someone with hypothermia usually isn't aware of his or her condition because the symptoms often begin gradually. Also, the confused thinking associated with hypothermia prevents self-awareness. The confused thinking can also lead to risk-taking behavior.

 In the person with PWS, lack of coordination, weak pulse, shallow breathing and low energy may be baseline, so it is important to tell any medical professional what the person's typical presentation looks like. It may also be difficult for a person with PWS to accurately describe the pain they are feeling.

 Here are some precautions that you may want to take, especially when caring for an individual with PWS:



• Keep an emergency box in your car including blankets and hand and feet warmers. Many people experience hypothermia and frost bite when cars break down in frigid temperatures.
• 

If your child runs away often, consider a GPS location bracelet or anklet so they can be found easily. This device has saved lives.


• Plan ahead for storms and inclement weather so you are able to stay indoors. If you need to leave your home, consider having someone come to your home to watch your child instead of having them leave the house with you. 

It only takes a few minutes of exposure to cause serious damage.

 If you suspect that your child may be suffering from hypothermia call for emergency medical help immediately and if possible, take the person inside, moving them carefully and slowly. Jarring movements can trigger dangerous irregular heartbeats. Carefully remove wet clothing, and cover him or her in layers of blankets while you wait for emergency help to arrive.

Patrice Carroll

Manager of PWS Services

Hopes and Happiness for the New Year

I spent much of last week talking to our students and adult residents about the new year. We discussed their hopes and dreams for the coming year, and their regrets and achievements of the past year and what they would like to do differently over the next 12 months. I wanted to share some of their comments with you.

"I want to be healthy and happy and all of that but what I really want is a girlfriend." - 16 year old male

"Last year wasn't so great but it was better than the year before that so that's something, right?" - 23 year old female

"I want next year to be just like this year because I'm happy." - 19 year old male

"I want to keep my job and my girlfriend. That's all I want." - 45 year old male

It struck me as I was doing these informal interviews that not one person said that they wanted to move or make any major change in their lives. I heard an overriding theme of happiness and contentment that I am certain I would not have heard if I had interviewed a typical population. Maybe that is their lesson to us: that it's okay to want but in the end be happy with what you have and where you are.

With that I will leave you with perhaps my favorite quote of the year:
"2015 is going to be awesome because I'm awesome so how could it be anything else?"- 15 year old male

Patrice Carroll
Manager of PWS Services

TIP of the WEEK: Setting Realistic Goals

As the new year approaches, many of us will be looking at what changes we want to make in our lives and creating plans to hopefully keep those changes in motion past the first few weeks of January. Here are some ideas for setting goals and keeping the momentum going for both yourself and your child:

1. 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. Losing 50 pounds is an overwhelming goal but losing five pounds is more realistic so the goal is to lose five pounds 10 times. Start with something that can be achieved, reward the success, and then slowly add small increases of new expectations.

2. Allow for setbacks. Not achieving a goal does not mean that the goal is unattainable. Look closely at the circumstances, environment, and anything that could have caused the setback. Get right back on track and keep trying.

3. 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.

Regardless of whether the goal is for you or your child, be sure it is attainable with many layers of opportunities for success.




Patrice Carroll
Manager of PWS Services

TIP of the WEEK: The Christmas Countdown

For any parent, this week is stressful. For the parent of a child with PWS, it can be next to impossible without the right supports in place. Here are some tips to survive the holidays:

1. Take time for yourself. You will not be any use to anyone if you don't take care of our own needs. Eat right, sleep enough and slow down in general.

2. Allow for imperfection. Give yourself permission to make mistakes, to downgrade your plans and to delegate responsibilities.

3. It's okay to let people down. If you accepted plans to attend a party and things have not gone as planned, or at the last minute the thought of going is about as appealing as a root canal, don't go. It really is a simple as it sounds.

4. Keep it simple. You may typically celebrate the holidays with a large extended family but if that will cause your child (and in turn, you) high amounts of anxiety, then plan for a small celebration at home with immediate family members.

While your idea of a perfect holiday celebration may involve lots of gatherings, food, and family, your reality may be very different. If you can learn to accept your new reality, then you are on the way to making new, beautiful traditions that may be different but still joyous and full of love.

Happy Holidays to you and your family. You are perfect just the way you are!



Patrice Carroll
Manager of PWS Services

TIP of the WEEK: It's Not Just About the Calories

With Christmas right around the corner some parents have asked that we re-post this blog from a few years ago. One of the hardest things to do is to say no to a child who's saying that they're hungry but with a little education your family members will see that it is the most loving thing that you can do.

Many of you have asked that I talk in greater detail about getting through the holidays, specifically about how to explain to family members (grandparents in particular) about their child's diet. How many of you have heard the following:

"It's only one cookie"
"It's a special day"
"He's thin"
"You don't need to worry about his diet anymore"
"You're being too strict"
 "Just this once."

Grandparents want to spoil their grandchildren and in many cases that includes food. Not giving their grandchild special treats goes against their nature, especially when that child is saying that they're hungry. Will one extra piece of cake ruin their diet and make them gain 5 pounds? Probably not but it's not just about the calories. We have an obligation to create an environment for our kids where they can thrive and that includes managing their expectations regarding food. When our kids know what they are going to eat, how much, and when, they can relax and can focus on the rest of their lives. When extra, unexpected food is introduced they feel anxious, stressed, and out of control.

Giving a child or adult with PWS more than what they were told that they would get creates anxiety and anxiety leads to unwanted behaviors. You are no longer grandma or grandpa, you are a food source because you created an expectation. You want your grandchild to want to see you for your love and comfort, not because you might slip them some treats that they shouldn't have. Spoil them every time you see them with presents and hugs and your company, not with food. If for no other reason than the more secure their minds are about what they are going to eat, the better behaved they will be. "Just this once" hurts them. It makes them feel unsafe and anxious and that is the last thing that you want your grandchild to feel about you. And if you think that this isn't fair, you're right. It's not fair that they can't have what the other kids have and that we have to be so careful about what we give them, but it is our reality and sticking to it will make your grandchild and your whole family better for it.

TIP of the WEEK: Conflict Resolution

It is not uncommon for children and adults with PWS to find themselves in the center of a conflict at school, work, or in the community. Poor impulse controls, communication challenges and/or a lack of self awareness can lead to struggles in certain social situations. Here are some ways to help resolve conflict if it arises:

• Be sure that your child understands or at least hears his or her part in the conflict. It may very well be that a lack of preparation or understanding on someone else's part caused the problem, but it is more important and beneficial for your child to hear how he or she could have handled the situation differently. You can then privately address the other party involved.

• Don't rush to fix it. If your child loses a job or a friend as a result of his or her behavior, don't try to resolve this on your own. Your child needs to be the person to explain and apologize. Let them do the fixing. If you are always the one cleaning up the mess, your child will not learn that actions have natural consequences nor will they learn that if he or she caused it. The child needs to fix it.

• Raise your expectations. The higher you set the bar, the higher your child needs to reach. The most successful children that I have met have parents who expect more, push more and do not allow their child's diagnoses to excuse poor behavior.

• Be a support. Validate the challenges that your child has and coach him or her as to how to repair a damaged relationship; but remember that the key is to support and not to do it for them.



There will likely be many conflicts along the road. Teaching cause and effect from a young age allows children the benefit of stronger relationships as they age.



Patrice Carroll
Manager of PWS Services

TIP of the WEEK: Following Directions

Here are some ways to help your kids follow directions:

1. Keep instructions clear. Use as few words as possible when giving your kids an instruction.

2. Wait several seconds after telling your child to do something. Our kids often have a processing delay and need up to 20 seconds after hearing something to fully process what they heard.

3. Tell, don't ask. If you want your child to do something, don't present it as a choice. Asking infers that they have an option to say no.

4. Give one instruction at a time. Multiple steps can be overwhelming. Often the last thing you say is what he or she will process. This can cause confusion and may lead to acting out as a result.

5. Finally, ask them to repeat what you just said. Many times our kids are not being defiant; they simply did not understand the request or what they need to do to fulfill that request.




Submitted by:
Patrice Carroll
Manager of PWS Services

TIP of the WEEK: Being Thankful

Well here it is―the biggest food holiday of the year right around the corner. While we spend the next few days planning, worrying, and trying our hardest to make a stressful event go smoothly, I encourage you to find the good and be thankful for everything that you have.

As you can imagine, this time of year is our most challenging and in an effort to minimize my own stress, I wrote out my list of what I am most thankful for:

1. I am thankful that our kids and adults have a place like Latham Centers―a place where people with extra special needs can flourish and grow in an environment of safety, love, and understanding. So many people living with rare diseases are left to manage complex needs and multiple challenges with no access to specialized care. I am thankful that our loved ones have Latham.

2. I am thankful for our parents and families who entrust the care of their children to us. We are better people for having worked with your children; and we do not take that relationship for granted. Thank you.

3. I am thankful for our staff that come to work every day with passion and creativity. I am filled with pride when I see how incredibly hard our staff work and how excited they become when they witness growth and success in our children and adults.

4. But mostly I am thankful for the smiles that greet me every morning. Smiles from students and adults who wake up every day facing unimaginable odds with bravery and courage.

My time in the world of PWS has run the gamut from being awe inspiring to downright humbling. The individuals with PWS have taught me that no challenge is too big, and to never, ever give up and to never assume that you have seen it all. And for that I am eternally thankful.

Please take some time this week and take note of the good.
Happy Thanksgiving everyone!





Patrice Carroll
Manager of PWS Services

TIP of the WEEK: Transitions

Transitions are the single most challenging part of any day for the person with PWS. When a person with PWS is faced with a big transition, it can be that much more challenging.

Here are some ways to make transitions a little bit easier:

1. Practice with social stories, verbalizing what each step will look like, and doing dry runs. This will allow your child to mentally prepare for some of life's bigger transitions like changing schools or moving.

2. Validate and plan for anxiety. Transitioning from the familiar to the unfamiliar is extremely difficult for our kids. Plan to have extra supports around for both you and your child.

3. Allow for setbacks. In being patient with the process, it will allow for long-term success; and you will be teaching your child that the best things are worth fighting for.

4. Most importantly, be there for your child without doing the work for them. Allow for some of the bumps that inevitably come with a big transition and show him or her that they can do this even with increased anxiety.


Patrice Carroll
Manager of PWS Services




Related Posts:
A Transitonal POV
Living with Anxiety
Coping Strategies

TIP of the WEEK: Bladder issues in PWS

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). Individuals 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 too well if you have ever been stuck in traffic with a person with PWS that once he or she has to go, you have minutes at most to get to a bathroom. So here is what you can do:

1. Plan bathroom breaks at least every hour whether your child has the urge to go or not.

2. The flow of a person with PWS is different as well and he or she 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 your PWS individual to take in fluids during the daytime and less so in the evening. Overnight incontinence is extremely common. Restricting fluids after dinner will help with this.

4. Avoid shaming of any kind. This will only foster sneaking behavior around incontinence such as hiding wet underclothes and pants, unwanted behaviors due to embarrassment or guilt, etc...

Don't forget that people with PWS are more prone to hyperhydration than a non-PWS person. Hyperhydration can be just as or even 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: Should We Stay or Should We Go?

You will ask yourself this question dozens of times between now and the end of December. The holiday season brings parties, gatherings, and special events that stray from your normal routine. In other words, they bring anxiety. Some family members will insist that you come to their parties, while others will ask you not to attend with your child. Both scenarios are equally as stressful and will leave you feeling guilty regardless of your decision; but it doesn't have to be that way. Here are some things that you can do to make the holiday season what it should be, festive and full of wonder:

1. Be realistic. You know your child better than anyone. If you know that your child cannot handle a large party, then do not set them up to fail. Plan a smaller get together where your child can be included or arrange for your child to attend the larger party for a short amount of time.

2. Use social stories to prepare your child for what to expect. More exposure to change does teach flexibility in the long run. Just be sure you have the necessary supports to manage your child if he or she becomes overwhelmed during the event.

3. Give yourself permission to stay home. If you know that attending a party will be too much, then don't go. If your family is discouraging you from bringing your child, opt to plan a smaller event where they can see for themselves how amazing your son or daughter is without the anxiety that a large event can bring.

4. Most importantly, plan time to enjoy yourself and your family during the holidays. If that means keeping it low key, then do so. Whatever you plan, just remember that the holidays are a time to be with family and friends in whatever way feels most comfortable for you and yours.





Patrice Carroll
Manager of PWS Services