Latham Centers Blog
"Walks. The body advances, while the mind flutters around it like a bird." ~Jules Renard
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What a day! I want to thank ALL of you that helped out today. This day was truly amazing. Many community members were able to see our students at their best today. The volunteers also were able to see our amazing staff in action.
Nursing: For being flexible with our students today.Brooke: For your help in supporting Brian.Trish: For gathering our Latham dresses that were much needed.Gina: For your leadership during the fitting, many behaviors going on.Anthony: For transitioning the gentlemen after their fitting.Jesse: For all of your hard work with Anthony C.Chris: For all of your assistance with both the students and community membersWest Wing and The Deck: For allowing the volunteers to use your space.Ed. Staff: For keeping the students engaged with their Generosity project.
I wish everyone could have seen the joy in EACH of our student’s faces. The attached picture tells it all.
Thank you,Gerry Pouliot
"He is constantly bumping into things."
"She never sits still!"
"He would wear shorts in the middle of winter if I let him."
"She just starts screaming for no reason."
"He just falls asleep when he doesn't want to do something."
These are things that I often hear from parents and teachers about their child with PWS and their frustration comes through clearly. The reality is, many do show signs of being uncoordinated, fatigued, antsy and agitated but there are very good reasons for this. Sensory processing disorders make life so difficult for those living with the inability to make sense of their environment. Imagine living with extreme sensitivity to sound, touch, temperature and sight? Think about how you would respond to constantly feeling itchy, cold or hot, tired or living with external sounds or light that are so distracting that you lose concentration and focus every time you hear or see them? This is what our kids live with every day and the fact that they are able to get through their days as well as they do is a testament to their resilience. If you start to see or start getting reports from school that your child is more easily distracted, beginning to disrupt the classroom with frequent outbursts, layers their clothing or takes it off at inappropriate times- seek out the help of an experienced OT. You may be seeing the results of a sensory processing disorder and there are dozens of activities that can help make your child more comfortable and live with a better quality of life.
Manager of PWS Services
Self Injurious Behaviors
Strategies for the Classroom
You'll find great art and many decorative styles including: shabby chic, traditional, cottage, shaker, mission, antique and contemporary. At Home Again only accepts high-quality furniture and accessories. Learn more at www.athomeagainchatham.com
It was a pleasure to be able to spend a shift with our residential staff at Latham School. It was a bright, sunny afternoon and students and their coaches were practicing for the upcoming Special Olympics track and field event scheduled for May 18th. The campus field was alive with a variety of field and track events including the broad jump and the ball toss. Students were riding their bikes and there was even a siting of our VP of Adult Services circling the field with his bike helmet securely in place. It is clear that our students will be wonderful competitors.
Because the weather was so great I was able to enjoy my first picnic of the season with students and staff on the lawn. It was a relaxing interlude with good conversation and lots of questions about the evenings activities. It was “beauty night” and there was something for everyone. Students and staff donned stress masks. Some students had their hair done and others were intent on doing their nails. Everyone was involved and having a good time. By the time bedtime arrived everyone was truly ready for a good night’s sleep.
President and CEO
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"I've never seen a smiling face that was not beautiful." ~Author Unknown
In July, Patrice has been invited to present at the IPWSO Conference in Cambridge, England. Patrice will be called on to again speak on the topic of sensory integration and how those with PWS can benefit from incorporating more of it into their daily routine.
IPWSO's 8th International PWS Conference Cambridge, UK, July 17th-21st, 2013
The excitement continues into September when Latham Centers, along with our friends and colleagues at Advocates, Inc. and PWSNE host our third conference at the beautiful resort, Ocean Edge, in Brewster. This event has been carefully planned to aid families and professionals on topics they have been asking us about: PWS Best Practices.
PWS Conference 2013
Click Here to View Conference Schedule
Friday September 20th only: $75 per person
Saturday September 21st only: $100 per person
September 20th & 21st: $150 per person
REGISTER ONLINE HERE
And finally, we are looking forward to seeing many friends and colleagues down in Orlando at the PWSAUSA Conference in November, 2013 too! More to come on all of the conferences as details firm up. Please be sure to stop by and say hello if you are in the area—or if you are attending any of these wonderful events. We would love to see you!
You are the mother of a child with special needs. In the early years you may have mourned and been jealous of the moms of " typical kids" and then as time went on you accepted that you have been given a gift; a gift of a child that has brought you joy beyond your wildest expectations. You would not trade your life for one that may have been easier because an easier life would not have left you with the strength and tenacity that you now have. An easier life may have been less lonely and more self indulgent but an easier life would leave you without the child that has defied all odds, that brings pride in every milestone even if those milestone happen years later than those of their peers. You are the mother of a child who has survived and thrived in a world that isn't always kind to them and they have made it because of you. You have been on their side, been their champion even when every "expert" and doctor has told you otherwise. You are brave and irreverent and compassionate beyond what seems possible because you have witnessed miracles first hand. Today I say Happy Mother's Day to you and ask that you please do something nice for yourself because you have earned it.
Happy Mother's Day from everyone at Latham and rest in the knowledge that we may never love your child as much as you do but we come pretty darn close!
Manager, PWS Services
Caring For Yourself
A Life Lesson
Learn to Love the Dandelions
"Mother love is the fuel that enables a normal human being to do the impossible." ~Marion C. Garretty
Latham volunteered at the Ragnar Relay Series held on 5/3-4/2013 down Cape in Provincetown. The start of the race was in Hull, Ma. The runners set towards Plymouth and ran along the canal trail, pristine beaches and historic towns to cross the finish line at the Pilgrim Monument. This year the Ragnar Relay,Cape Cod, benefited Special Olympics. Lathamhad four of the adult individuals and two staff attend this event. The individuals volunteered to cheer on the runners and pass out medals as they crossed the finish line. After volunteering for a couple hours the group browsed the P-Town shops and enjoyed the scenery. Everyone who attended had a great time and look forward to doing it next year!
David JohansenHouse Manager
"The miracle isn't that I finished. The miracle is that I had the courage to start."
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Six students and two staff braved the elements on a chilly Cinco de Mayo and rode on the Tails of the Sea out to Stellwagen Bank in Cape Cod Bay to see the whales. The day was not promising and we did not think we would see many whales. As it turns out we must have encountered a bunch of Hispanic whales celebrating the day, breaching and broaching their way in a feeding frenzy. The kids loved all the action and were extremely well behaved and courteous to others. It was obvious the whales, (humpbacks and Minke) did not enjoy food security as they feasted their way in green, bubbled water, with tons of gulls following their every move. Poor Jake’s legs were as blue as the water. Little did he know that he would be spending his day on the high seas.
Vice President Children’s Services and
Latham Goes on a Snow Tubing Adventure
Trip to Roger Williams Performing Arts Center Fun for Everyone
Summer at Latham
“It is only in adventure that some people succeed in knowing themselves- in finding themselves.” ~Andre Gide
May is a special month. It is a month when we take time to spread the word about a syndrome that is near to our hearts. Although many of us do this year round, May is the month that congress established PWS awareness month in 2009. The meaning of this is best described by PWSAUSA:
- Please help spread awareness of Prader-Willi syndrome and help save lives.
- Please help to create a compassionate environment for those who bravely struggle with this disorder, living in a world where the biggest threat to their lives is food-the very item they need to live.
- Please help create acceptance of our loved ones with PWS, who struggle in a society that shuns those who are overweight.
Those with PWS just want to live a healthy life with acceptance of who they are, just like anyone else.
At Latham, we take this month to focus on community awareness. Today, myself and other members of the Latham team gave a training for the Cape Cod Hospital emergency room staff. While in our care our children and adults are guaranteed quality care and adherence to best practices and we need to ensure that when the care gets shifted that those people are also well trained. I'm happy to say that we were met with interest and compassion from the hospital staff.
We are all familiar with the quizzical stare that we get when we talk about PWS to an outside person who has never heard of it (which is just about everyone!) and the frustration when even after our explanation someone decides that one lollipop or cookie can't possibly hurt.This is our time, our month to spread the word and teach our communities about the needs of our kids and adults.I have experienced that most people welcome the knowledge and people in general want to do good and want to do what's right. All they need is a little information and the more people who have that, the better off our kids will be.
Manager of PWS Services
Rare Disease Day
Students Helping Students Understand PWS
Wow. It seems like overnight, the gardens, trees and birds have erupted all around us! Spring has gloriously arrived and Latham School is shaking off her winter coat! The painters are coming, the grass is being mowed, the kids are prepping the gardens and picnic lunches, long overdue, are happening. Latham School is situated on a beautiful campus and making it a home is our shared responsibility.
Maintenance staff, housekeepers and staff from all parts of the program are helping students and the program de-clutter and organize for the outdoor season. Gone are mittens, boots and coats. Hello to sunscreen, baseball hats and tee shirts! This is a learning experience for students to assess what gets put away, given away or tossed away. Not easy concepts for any of us who become attached to the familiar.
So, take a cue from the kids. What can still be used by others will be gratefully received by any number of local groups in your area. Feel good about helping someone else in need. Lightening your clutter will lighten your mood. Now go outside and play!
"Have nothing in your home that you do not know to be useful or believe to be beautiful." ~William Morris
The Latham campus is located in the beautiful town of Brewster. Brewster is a small, idyllic town that has a strong connection to the sea (we are known as the Sea Captains town), but is also very rural and not at all flashy. Brewster is a place that still cares strongly for the members of its town. It is a strong, vibrant community that encompasses all that jumps to mind when you think of small town New England. Our students are important and celebrated members of the Brewster community. This weekend one of those “small town” events took place. The annual Brewster in Bloom Festival celebrates the arrival of Spring and allows our students chances to access all that is great about living in a small community.
On Saturday, the Latham Centers had a table at the Brewster in Bloom Craft Fair. For the previous month, students have been creating crafts to be sold. They made jewelry, framed photographs and painted pictures. From 10-3, student volunteers greeted customers and sold the merchandise. This type of activity is what we strive to do since all the work involved is meaningful and has value. All proceeds from the sales at the Craft Fair are going to a charity that the Latham Student Council will decide on in the near future.
Ryan is a student that has been training to run the Falmouth Road Race, which is a 7 mile road race that takes place in August. He successfully ran the race last year and has been working to improve on his times this coming year. Ryan ran the Brewster in Bloom 5K this past Saturday as a way to train and have fun. Although he says his knees were a bit sore after the race, Ryan related wonderful stories of people cheering him along as he ran his hardest. At the finish line, a group of supporters both from Latham and the larger Brewster community were waiting to congratulate Ryan on his success.
Just about all the students that were on campus went out into the front yard on Sunday afternoon to watch the Brewster in Bloom parade. Sitting on the grass with the sun shining down was an ideal way to celebrate Spring; especially after the long Winter we have had. Nothing is more small town than a parade. As the trucks and floats came by there seemed to be an extra flurry of waving between our kids on the ground and the participants in the parade. Everyone knows they will get a huge welcome when they pass our campus.
Thank you Brewster for taking such good care of Latham. We are grateful to be a part of the community and thankful to so many of our neighbors who support are students in so many different ways.
Come On Out and See the Parade
Spring Begins With a Running, Jumping, Throwing Start
Latham Children Celebrate Spring With a Concert
"Poor, dear, silly Spring, preparing her annual surprise!" ~Wallace Stevens
We often use incentives to help our kids through their day, to help them stay on track and to encourage them to keep trying. But with so many incentives. the clutter builds up quickly and we want to be careful not to promote collecting and hoarding at a young age. I prefer to use incentives and prizes that are not tangible goods but rather things that can be earned that promote social interaction, independence and increased self-esteem. Tristan Reilly, one of our special education teachers has some great ideas for this kind of incentive:
Use the “teacher chair” for the dayUse the rocking chair for the dayTen minutes after school with:
- A magazine
- Computer time
- A book of choice to read
- Ten extra minutes in the sensory room
- Ten extra minutes with the mp3 player
- 5 minutes walking loops on the track
- 10 minutes on the swings
- Adding 30 minutes to their bedtime on a Friday or Saturday night for a week of good behavior in school.
- Allowing them to pick a new app that's fun and geared towards learning.
- An agreed upon independent walk, even if it's small like getting the mail alone.
- Extra time on the computer or game console for a day without shutdowns, tantrums, aggression etc...
Submitted by:Patrice CarrollManager of PWS Services
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Latham Centers is looking forward to meeting folks at the 23rd Annual New York Prader-Willi Alliance (PWANY) Conference in Syracuse NY on Friday & Saturday, April 26th & 27th. Patrice Carroll, Manager of Prader-Willi Services and Pam Nolan, Director of Children’s Services will be speaking on the topic of Sensory Integration. It looks to be a great couple of days filled with topics of interest for families, care-givers and professionals. If you are at the conference, please be sure to stop by and say hello!
It seems to finally be true! Spring has arrived at Latham School! Kids are playing in the sun. Shouts are reaching my windows from the playground and daffodils are blooming all around us. Physical activity is especially important to our students and nothing beats an afternoon out and about. So, I plan to emulate them when I get home today. No iPhone, iPad or TV. I am hooking my dog to a leash and taking a walk. We may not get far, but the journey will be worth it. Sometimes, you just need to follow the lead of the children…..
"There is no season such delight can bring
As summer, autumn, winter and the spring."
Vacation week is in full effect here at the Latham Campus. Students have been out enjoying the beautiful weather and riding bikes all over Cape Cod! We have had the opportunity to take some of the bike paths in Harwich and Brewster and spend some afternoons riding bikes and stopping for picnic lunches! Today we are going to see a shark exhibit at the Massachusetts Maritime Museum. The students are going to learn all about sharks, and also going to get an opportunity to make their very own buoys. Some of our students are going to a class at the Brewster National History Museum this week to learn how to make their own wind chimes.
Also on campus we have a Tie-Dye party coming up on Friday where students will be able to design and tie-dye their own t-shirt. And to celebrate such an exciting week, on Friday we will have a big cookout for lunch! There will be dancing and music for all to enjoy!
"Fun is about as good a habit as there is." ~Jimmy Buffet
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We don't always know what's behind a meltdown or behavioral crisis but we do know that their feelings are real. Their reactions to certain circumstances can seem over the top or unnecessarily dramatic but underneath are real feelings of frustration, sensory overload, rage, and plenty more. To effectively deescalate a meltdown you don't need to necessarily know why the behavior is occurring, only that whatever happened is causing this child or adult to feel out of control and validate that. Compassion and empathy, validation and a calming presence can go a long way in helping someone who is feeling out of control to calm down and come back to their baseline.
- "I don't know what's made you upset but I care about you and I want to hear about it."
- "I know how much you love your sister and you must have been really mad to say those things to her. Tell me what got you so mad."
- "You're my friend and it hurts my feelings to see you this upset. Will you tell me what I can do to make you feel better?"
Commands, threats, or bribes don't work and often make the situation much worse. Being present and caring goes a long way and is a more respectful way of allowing a person to come back from an outburst. After, let them rest and allow them time to talk about what happened and what lead up to it, talk about other ways of handling strong feelings and over time these alternative approaches to feelings of hurt or anger may sink in. I have seen amazing transformations happen simply by letting a child know that you are on their side and allowing them to have at least one person who really believes that they can do this, that they can be in control of their feelings. It takes time but it does happen. And doesn't everyone need someone in their lives who keeps coming back even when we show them our worst?
Manager of PWS Services
"We have two ears and one mouth so that we can listen twice as much as we speak." ~Epictetus
Words can’t begin to describe the sense of extreme sadness and yes, fear too that came over me as I rode the bus home from Boston to Cape Cod yesterday. Now, it’s anger and frustration that once again, we have an as yet unknown, callous and cowardly act of terrorism here in Boston. I won’t give in to fear. I want to focus instead on the heroes among the crowds; the people who ran towards the danger, the strangers who stopped to help, the medical workers who saved more lives than were lost, the people of the world who came to see a race and ended up seeing how courage and compassion make us who we are. Thank you. Carry on.
As we prepare to say goodbye to a long term and beloved student today as she graduates, I have had requests to re-post this tip. I have to admit that seeing kids leave is one part of children's services that I have not and probably never will get used to.
April, we love you and will miss you dearly. Congratulations on your graduation and we will never forget the joy and energy that you brought to all of us.
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.
With Mother's Day and graduation season around the corner, I find myself wanting to share the story of my only child, who will soon be an official high school graduate. As a grade school teacher, education is so important to me, as is parenthood. Our story is about both.
My son, Dalton, age 22, was born with Prader-Willi Syndrome (PWS) - a Chromosomal disorder with no known cure that manifests itself in many cruel ways including an insatiable appetite and behavioral and developmental challenges. In spite of the syndrome, Dalton remains a positive, caring and very determined young man. So much so that his goal is to be President of the United States! We told him that in order to hold this office, one should have a high school diploma.
And that is exactly what he will be receiving this June thanks to the life-transforming help of Latham School and, now, Latham Adult Services. With incredible gratitude, I decided the greatest gift I can give back is to reach out to others and ask you to join me today in making a tax-deductible gift to Latham Centers.
Dalton's father and I have always tried our best to care for Dalton, support his needs and encourage him to focus on his abilities more than his disability. Dalton attended public schools until he was 18 years old. Each year we would try to educate his new teachers about Prader-Willi Syndrome and Dalton's specific needs. While the school system acknowledged Dalton's disability, they were puzzled by the inherent drive to seek food and the persistent distraction and torment this caused him. Bake sales, vending machines, cafeteria meals and other students' unlimited snacking were all overwhelming for him.
Through all the years of academic and social challenges, he did not waiver in his deep desire and determination to accomplish his goal. In high school, the tension and frustration mounted. there were many nights he would stay up to work on assignments, finally breaking down. Sobbing in despair, he confided in me that "My teacher's talk too fast. I can't understand them." But he would not give up trying.
Dalton was a teenager yearning for independence, despite his inability to keep up with his classmates. This led to many escalated conflicts at home around time schedules, getting ready for school in the morning, food preparation and bedtimes. We all collectively reached a point of exasperation; and Dalton began to think he would never achieve his goal of earning his high school diploma and being able to live independently. The challenges became too daunting for all of us. Each day was a struggle and the stakes were getting higher.
Years earlier, we had heard of Latham School at a conference, but we weren't ready to let Dalton go at the time. Now, we were in crisis! We called Latham and scheduled an appointment to visit Latham School. After we toured the small but intimate campus, we had no idea how Dalton would react to changing schools and living away from us at least until the age of 22, when Latham School students graduate and transition out. On the way back home, Dalton told us that he felt like Latham was his new home! He loved it!
At Latham, everyone knew about Prader-Willi Syndrome and other kids with complex special needs. For the first time ever, we did not have to educate his teachers about PWS. The supports he needed were already incorporated into the Latham educational, residential, clinical and vocational systems. With all the supports in place, Dalton was able to focus on his personal, academic, and social goals. He was among a whole group of people who understood him. He could be himself and be helped with developing more effective coping skills.
After an adjustment period, Dalton began to blossom. He set realisitc goals for himself and actually became President-not of the United States but of the Student Council and of his homeroom class. He also began to volunteer as the first-ever math tutor to the other Latham students, and immersed himself in writing and sports activities. Special Olymics provided him social and physical outlets. Our son was now actually a leader among his peers instead of a stressed out and ostracized high school student.
Latham and its caring, creative and compassionate staff have afforded Dalton many opportunities for healthy activities in the community. As all this good unfolded, Dalton's Dad suffered a debilitating stroke. Thankfully, Latham staff were still there to work tirelessly on finding opportunities that mattered and appealed to Dalton as a valued individual. First he secured work experience in the campus greenhouse, and with assistance from Latham's vocational staff, he then applied for and landed a job at a local nursery.
Latham Centers has been a gift from heaven for our family. We have peace of mind, knowing our son is being well-cared for, happy, safe and enjoying quality life experiences. Because of the support Latham provided, Dalton reached him goal of earning his high school diploma and is now prepared to pursue new goals as an adult living in one of Latham's adult group homes for individuals 22 years of age and over.
Today Dalton attends a weekday enrichment program for adults with similar interests and aspirations, and is training to be certified in Latham's innovative Donkey Therapy Care program. Later this summer, Dalton will run in the Falmouth Road Race for Latham Centers. All of these activities build confidence, self esteem, empathy for others, and a deeper connection to Dalton's new home away from home. He is officially a Cape Codder and tells us he is "doing stupendous."
Won't you please make a gift today so every individual at Latham Centers continues to receive a fair shot at attaining a brightter future, and a productive life in the community: We all deserve that chance. One individual at a time.
Dalton's Grateful Mom