Friday, September 28, 2012

TIP of the WEEK: Vestibular Deficits

Have you noticed that our kids often have difficulty with balance, gait, sureness of foot on uneven terrain? It is likely caused by a deficit of their vestibular sense. Inner ear development begins in infancy when babies move their heads back and forth as they are experiencing the world. Babies with PWS often do not do this because of low muscle tone and therefore this very important sense does not develop properly. What we see as a result is hesitation of movement, poor posture, fatigue, agitation and poor balance. The good news is that it's not too late to fix this. To aid in vestibular development try the following exercises daily:

  • Bend your head forward slowly then tilt it back with your eyes open. Turn your head side to side, slowly and with your eyes open.
  • In a seated position turn your shoulders side to side and up and down. Bend down as if you're picking something up off of the floor.
  • Go bowling. This requires you to stand up straight and then bend forward repeatedly.
  • Any activity that requires spinning- sit and spin for little ones and merry go rounds or other playground equipment built for older kids and adults.
  • Yoga or any of the martial arts are also great.
  • Jumping from object to object, this can be as simple as putting colored circles on the floor. Hopscotch works well too.
  • Swinging, especially if you tip your head forward and backwards while doing it.
As with any new exercise routine, consult your doctor or OT before starting something new.
Good luck and let us know the results!

Submitted by:
Patrice Carroll
Manager of PWS Services

Thursday, September 27, 2012

Belgium Bound!

I will be back on the road again, this time visiting Belgium in early October.  I would love to meet and talk with families who have a loved one with PWS. If you are near Antwerp and would like to meet for a cup of coffee and a conversation, please e-mail me at:  I will be in the city from October 7 to October 11, 2012. If meeting at another location would be easier for you, and I can get there by train, we can make that work too! I am interested in learning what supports are available to you, what things you are struggling with and how we can learn from each other. Hope to hear from you soon!

Chris Gallant
Vice President: 
Training, Marketing & Quality Assurance

Wednesday, September 26, 2012

Navigating Venice

I had the pleasure of visiting a fascinating place that has been on my “bucket list” for as long as I can remember: Venice. It was all that I hoped it would be and more. How do you describe a city without cars, taxis, buses or  trucks? Even bicycles are absent. You walk everywhere--up one bridge and down another;  or you hop in a boat.  A city so silent at night that you wake from the lack of noise. I found the experience of Venice to be profoundly complicated. On the one hand you have the stunning art, architecture, food and visions of a city floating in the sea. On the other hand, if you have any challenge with mobility, you are faced with a difficult task getting from one place to another. I wondered how people needing assistive technology navigated this city. Wheelchairs were few and appeared to be used mostly by tourists. The option of pulling up to your front door and getting into a car is not possible. Getting into a bobbing boat from a floating dock is tricky on two legs, never mind from a wheelchair or on crutches. Canes seemed to be everywhere and baby carriages less cumbersome than chairs. So, I take my hat off to the residents, travelers and explorers who in spite of their challenges, made a complicated city part of their life experience. I hope they found it worth the effort! I know I did.

Submitted by
Chris Gallant

Monday, September 24, 2012

Making Space Our Own!

There is lots of decorating going on in the dormitory!  It’s a wonderful combined effort with both students and staff.  West Wing is decorated with a beautiful 3-D “under the sea” theme; with turtles, jellyfish, and other sea creatures.  In the North Wing, it feels as though you’re walking into a field of colorful butterflies.  The Upper Deck has many memories of the boys’ various adventures creatively displayed throughout the hall and common area.  These are all excellent examples of staff and students working together to create an environment of comfort and belonging.

Submitted by:
Bonnie McGee

"Where thou art - that - is Home." 
~Emily Dickinson

Friday, September 21, 2012

TIP of the WEEK: Rumination

This is one of those PWS behaviors that nobody likes to talk about. Bringing food up into their mouths after it's already been swallowed is not only socially unacceptable but also damaging to the lining of the esophagus. This behavior typically starts at a young age and unfortunately is not a behavior that decreases as the child gets older.

In some cases it is a medical issue, gastric reflux, GERD, or excess stomach acid caused by stress can be the problem and in those cases, acid reducers have positive effects. I have also heard of parents having good results with the addition of vitamin A. In other cases the behavior is just that, an unwanted behavior that can cause social isolation in school, embarrassment in front of family members as well as tooth decay. Here's what we have seen that has worked:
  • Exercise after a meal. We usually suggest the preferred activity to come after the less preferred activity but in this case hold the exercise until after they eat. Or do both if you can get away with it. Keep the exercise mild, nothing strenuous Moving around after a meal helps your body digest faster and therefore makes it harder to ruminate.
  • Sour spray. You will find this is the candy aisle, a no calorie spray with a very strong sour taste that lasts a long time. Because most kids enjoy the flavor they are less apt to ruminate because they want to keep the taste in their mouths. By the time the taste is gone, it's too late to bring any food up.

I hope this helps and remember, never feel alone when dealing with these behaviors. The more we talk the better we'll be.

Submitted by,
Patrice Carroll
Manager of PWS Services

Wednesday, September 19, 2012

Friday, September 14, 2012

TIP of the WEEK: A Life Lesson

We typically have only a few short years with the students at Latham until they graduate and move on to adult living. If the students take anything away from the years they spend with us I hope it is this:
Try. Keep trying and don't give up. Your potential is limitless if you put everything you have into achieving the goals you have set for yourself.

Trust. Trust yourself and the people around you. People are more good than bad and most of the people you meet will be on your side. Don't let a few bad experiences keep you from enjoying the many good experiences and relationships to come.

You are smart. You have skills and talents that contribute to your jobs, relationships and your homes. Your minds don't always work the same as everyone else's but you see things and feel things that others miss. There is no test that measures your intelligence because your intelligence is different, not less. Don't listen to anyone who tells you otherwise.

You are loved. Your family, friends and care givers want you to succeed because we love you. If we push you too hard it is because we know that you can do it, we have faith in you even when you doubt yourself.

You are worth it. We are in your lives by choice. We are in your lives because we want to be, we like being with you and want to see you grow even though is it so sad to see you leave.

Speak up. If you want something, go for it! We don't always know best and learning to advocate for yourself is the greatest skill you will ever learn.

Teach us. Tell us what you need, what works and especially what doesn't. Doctors aren't always right, science only explains so much. We need you to teach us about PWS, everyday.

Your time here will be filled with academics, learning coping skills and making great friends and in between all of the work and fun I hope you take away the really important stuff- trusting in yourself, advocating for what you want and believing that you are everything that you were meant to be.

Submitted by:
Patrice Carroll

Wednesday, September 12, 2012

Latham’s Gilbough Program Crosses the Bridge

In a historic first, Latham Centers has opened its first group residential site beyond the beautiful shores of Cape Cod.

June 29th marked the opening of the Gilbough (adult PWS) Program’s newest group residence located in Wareham, Massachusetts.  The extensively renovated, five bedroom colonial comfortably accommodates five of our adult individuals and all of their “stuff." The home is located in a quiet residential neighborhood close to the center of town and its array of recreational and shopping opportunities.  The new residents are excited about being part of Latham history and are busy exploring their new community on the “mainland."  They have already been to the local beach and water amusement park, and have taken advantage of the expansive local shopping at Wal-Mart, Target and of course Dunkin Donuts (for coffee only).

The residents are now eagerly planning an open house for some time in September to show-off their new home and meet their neighbors.   

Submitted by:
Mike Marchese

Monday, September 10, 2012

Nights of Latham

As the day grow shorter and summer comes to an end the students of Latham are beginning to think of the upcoming school year. Thoughts of new classrooms or teachers are at the top of their lists, but as caregivers we are thinking of how we can best prepare them for these new adventures.

Like many parents we are helping the students by getting new clothing. The staff at Latham truly believes that helping a student look their best is one of best ways to start their day. If the students (and people in general) feel good about their appearance it makes them more confident in their lives and our hope is that that confidence will carry over to other areas of their lives. Of course the long term goal is that the students will be able to master their personal care skills so they can be independent with this in their everyday lives.

Submitted by:
Melissa Weber

Friday, September 7, 2012

TIP of the WEEK: At the End of the Day

As staff people, teachers, medical professionals and family members we know that working and living with a person diagnosed with PWS can be challenging. We hit our pillows every night exhausted, not knowing if our interventions are helping as much as we would like them to, confused by behaviors and reactions that seem to change so frequently. But imagine being the person with PWS. Imagine not just the hunger,  but the fear and confusion that they feel everyday. Poor executive function does not allow them to organize their environment, let alone their thoughts; underdeveloped social skills make every new encounter a mystery, and lack of sensory integration makes them unsteady, uncomfortable and hyper sensitive to sound, touch, light and balance. So when we see these kids smiling, having fun and making friends, just imagine the strength and courage that takes. It is far more than I myself have. Their willingness to take risks, despite the challenges they face, has always been something that I have had endless respect for. The great successes that I have seen have been the fuel that has kept me searching for ways to improve their quality of life.

I have worked with a number of syndromes and disorders throughout my career but none have touched me in the way that PWS has. These kids are worth fighting for. So at the end of a long day, a day of tantrums and fighting, picking and shut downs- remind yourself what these kids face when they wake up in the morning. Try to think about how, even with everything that is stacked against them, that they try hard, they make us laugh, they care deeply for their friends and family, they are smart and sweet and loving, creative, courageous and ever so observant. To me, that is worth every long day, and at the end of that long day, if I am not exhausted, then I believe I am not working hard enough for the kids who give us so much in return.

Submitted by:
Patrice Carroll

Thursday, September 6, 2012

Kids Enjoy the Moose Lodge Carnival

This past Saturday, members from the Yarmouth Lodge of the Royal Order of the Moose brought a Carnival to Latham’s Brewster campus. Complete with a Moon bounce, dunk tank and a variety of carnival games, students enjoyed a festive atmosphere and a beautiful, sunny day. When asked what their favorite part of the carnival was some students reported getting to dunk their staff in the water while others enjoyed the bag of popcorn and cold drink provided. We are grateful that so many people in our outside community would donate so much time and attention to our students. 

The Moose have been hosting the carnival for over ten years and it is now a signal that summer is drawing to an end. The entire Latham community thanks the Moose for all they do for us and the rest of the Cape. 

Submitted by:
Tim Vaughan
Residential Director

Tuesday, September 4, 2012

A Daily Schedule from a Student’s POV

When parents and referral sources call me to inquire about our program, I often get asked, “What does a typical day look like?" I always wanted to give the most accurate picture, but being busy with admissions tasks, there is little time just to shadow children.  So, I asked Pam Nolan, the newly appointed Latham Program Director, if she would ask the Nauset classroom to give me a write up of a typical day.  To my delight, what I received was by far the best admissions material to date!  The students put together a whole booklet for me to share with new parents and students. 

A BIG, BIG thank you to all the Nauset students who worked on this project!  You rock!  We are working on getting this material on the web site, until then here is a typical day for the students in the Latham School (written by the students themselves).

Daily Routine:

7:00-7:30 wake up/shower


7:30-8:00 breakfast/meds
8:00-8:30 School
8:45-9:30 all classes (reading, science, P.E., social studies, voc skills, social skills, math, foreign cultures, writing & lit, performing arts, health, finance)
9:30-12:00 still classes
12:00-12:30 lunch
12:30-2:10 continue with classes
2:15-2:25 mindfulness, meds, homeroom

2:15-2:25 transition
2:30-3:00 snack

3:00-5:00 exercise for an hour, outings, dinner
5:30-6:00 chores, showers, evening refreshments,  eat dinner
6:30-7:00 TV/movies, free time, shower, phone calls, Beauty Night, electronics, game night
7:30-8:00 free time, arts and crafts, night time routine, meds, med fruit, TV, walk loops, phone calls
8:30-9:00 Bedtime, brush teeth, settling down, quiet time, TV
9:30-10:00 Bedtime

Submitted by:
Susan LaPlant
Admissions Director

Saturday, September 1, 2012

TIP of the WEEK: Story Telling

One behavior that we sometimes run into with the child or adult is exaggerating or fabricating stories. Sometimes these stories are harmless and seem entertaining, but sometimes the stories can be hurtful, especially if they involve accusing someone of doing something that they did not do. In both cases it is important to look for the meaning within the story.

I once worked with a man who regularly told stories of saving people's lives, and being a hero in near death situations. These stories were so detailed that it was hard to believe that they were not true. Ultimately, what he was telling the people around him was that he desperately needed to feel important, that he had worth and wanted to make a difference in the world. With lots of creative thinking and job coaching we got him a job that allowed him the basic human right of knowing and feeling that he was part of something and that his presence brought joy and meaning to others. Over time the stories he told were replaced with true stories of the great work that he was doing.

If your child is coming home from school or work with stories of peers or teachers/staff being mean to them, listen closely to find the meaning of the story. The story may be of someone yelling at them but the truth may be that there is something in that person's approach that may be bothering your child.

It is not always as simple as saying that fabricating stories is a behavior of people with PWS, it is typically a way of communicating and it is our job to decipher what the meanings of these stories are. It has been my experience that once the meaning is discovered the stories happen less frequently. The danger is in dismissing the stories as "typical behavior" which often leads to more exaggerated stories. It is up to us, the people who care most for these children and adults, to find the truth within the story and help them achieve their goals in a more effective way.

Submitted by:
Patrice Carroll