Latham Centers Blog
Making the decision to seek residential services for your child can be a difficult emotional process. Allowing your child to live, learn and grow in a PWS community, away from home can be one of the most loving and selfless things that a family can do. If and when you are faced with making that decision here is what to look for in a residential provider:
1. Are they active in national and/or international PWS groups? Does the agency participate in conferences or in any way further their knowledge by keeping up with the latest research and best practices? I can't stress this enough. We are in the middle of an explosion of new treatments and practices, does the agency you are considering stay abreast of these?
2. How does this agency resolve conflict or disagreements with families in regard to treatment? Families are the experts in their children, they know them far more intimately than a residential provider but providers are experts in long term care and the steps needed to achieve goals and be successful. Are parents an active part of the treatment team?
3. Is the agency strength based as opposed to restrictive? Any PWS provider will restrict food access but aside from that, are there practices that allow for your child to achieve their potential using positive methods? Look for a program that increases positive experiences for wanted behaviors as opposed to taking things away for unwanted behaviors.
4. Are other parents satisfied with the care their child receives? This will be a large indicator for you when you are making this decision. Parents who feel comfortable and satisfied with the care their child receives is one of the biggest indicators of a good program.
5. Do they walk the walk? Ask for examples of strength based practices, ask for examples of success etc... Do not simply accept the words you are being told, ask for instances when these theories became practice. Ask how they approach challenging behaviors when the old PWS standbys did not work. A good program should be able to easily provide these examples for you.
6. Is the program nationally accredited? Have standards of care, best practices, educational excellence been rigorously evaluated by a recognized program? This is an indication that the program is reaching beyond minimum requirements and striving to meet higher standards for the individuals they support.
No matter what program you choose be sure to allow for an adjustment period where everyone is getting to know each other. It typically takes one year to adjust and that adjustment is almost always harder on family members than it is in the person with PWS. Keep open lines of communication and a very open mind. It is not unusual for challenging behaviors to increase before they get better. Stay involved as an active member of the team and be open to new ideas and practices. Always remember that we are all working towards to same goal- for your child to be the best person they can be.
Manager PWS Services
You Should Also Read:
Top Ten Reasons Latham Excels in PWS Residential Placement
Habits. What I already know is easy. What I now need to learn is making me a little uncomfortable. I think this is something we all do; choosing the familiar over the new. I try to remember this when asking a student, individual or staff to try a new coping skill or a new behavior. It takes time to come to terms with this new, uncomfortable response. It takes patience to encourage and nurture it and it still must fulfill a need of some kind. Finally, it takes courage to give up what you know in favor of something different. Remember that the next time you ask a person to change their habit or “just stop doing that”.
Time, patience, fulfillment, courage. If I can remember this on my next shopping adventure, I can definitely save myself some guilt and money.
"The easier it is to do, the harder it is to change." ~Eng's Principle
Happy #GivingTuesday- December 3rd has finally arrived! Your end-of-year, tax deductible donation will help enrich programs for individuals with complex special needs, including Prader-Willi Syndrome, like the adult resident above. Vocational programming has helped him learn skills that he uses daily, while simultaneously working in the amazingly supportive Cape Cod community. Want to learn more about Latham Centers? Read a detailed account of how your donation will help our individuals, like Evie! We thank you for considering giving to Latham Centers, and ask you to share this momentous day with your friends at Latham Centers.
Want versus Need.
I want to be back at home, in pajamas and in bed. I need to be dressed, focused and at work. I think that sometimes the “wants” get ahead of the “needs” for me. The distinction between those two words is great. I have lots of “wants”. There is much out there to tempt me. Another trip to an exotic place? I want it. New Uggs? I want them. German car? I want it. But the fact of the matter is I only need “the needs”. Tomorrow I will be spending it with some pretty terrific people. So, I need you to have a wonderful day. Have a wonderful, joyous family holiday. Happy Thanksgiving!
"Everything is better in your pajamas"~Author Unknown
Traditionally this is the week that we reflect on the things in our lives that we are thankful for, the people and relationships that bring us joy. But what do we do when those very people are causing us so much turmoil and stress? There are families that are currently going through crisis with their children, battling behaviors that those outside of the PWS community cannot even comprehend and although the rest of the world is giving thanks, those families are crying for help, feeling hopeless and asking why this is the life that they were given. For those families I want to say: hold on, don't give up. It may be so hard to believe but this will not last and you will make it through. Try not to compare yourself or your child to anyone else, even if they are the same age and same developmental level. Everyone experiences PWS differently and it is not your fault that your child is having these challenges. Take time to look back to better times and remember the feelings that you had then because those feelings will return. Try not to isolate even if you feel like no one understands. Reach out to online groups if you do not have friends who have children with PWS (and most people do not). Call agencies for guidance, we take calls from parents regularly and are always happy to listen and give what advice we can. Use the resources from PWSAUSA, there are caring and experienced people on the other end of the phone and they want to help you. So even if it seems like you are alone and desperate, remember that there are people here to help and families that have gone through similar situations and come out intact on the other side. And give thanks even if the list is short because this time of challenge will pass and happiness will return to your family.
P.S please remember to assign one person to watch your kids this Thursday. Consider it the equivalent of a "designated driver". One person remains accountable, a group assumes that someone else is doing the job. Take time to review the signs of gastric distress and seek immediate medical help if necessary. Have a great holiday and don't forget to thank all those in your child's life that make a choice to be there. No one can care for and love your child like you do but we come a close second!
Happy Thanksgiving everyone!
Manager PWS Services
"If we are facing in the right direction, all we have to do is keep on walking." ~Buddhist Saying
Different Yet the Same
I just returned from parent/ teacher conferences for my fourteen year old daughter. Her teachers were full of praise for her academic achievements, her inquisitiveness and her kindness. Last week I had a quarterly meeting for my 17 year old son with prader-willi syndrome. There his teachers shared with me the progress he had made, what was challenging for him and what an inquisitive and kind young man he was. As all parents I am brimming with pride and realize that all the hard work of parenting is beginning to show itself. Certainly parenting my son has been much more difficult and challenging and will never end. My children are certainly different in a multitude of ways. However it is their kindness that makes them the same at the core and what I am most proud of.
It’s a beautiful day in the neighborhood! And all of a sudden I have a memory flash of Mr. Rogers walking through his front door. Boy, I haven’t reminisced about that wonderful PBS show in a long time! Now, back to my original thought—it is gorgeous, if just a tad bit chilly outside. My toes continue to be exposed in flip-flops because I am stubborn and set a date rather than a temperature to move to more weather appropriate shoe choices. I have a very warm office being near the copy machine and while it is annoyingly hot most of the year, I appreciate it today.
As many of you know, I’ve been on the road lately and it was wonderful chatting with people about Latham School and Gilbough, our adult program for individuals with Prader-Willi Syndrome. I am proud of the work being done by our dedicated professionals and always happy to meet families and share information. They often ask, “What does Latham do?” I love talking about Latham and I try in a very short period of time, to give an overview of our programs. Often, I look at the parent and usually end with “Latham gets it.” And we do. Three conferences later and I am heading back to Cape Cod.
It is good to be home and it is good to be back on campus. I like it here. My oasis is not for everyone and at times, it can be loud. I would be more concerned of a quiet place that is “home away from home” for 45 students! Amongst the noise I can identify the sounds of laughter, excitement, learning, sportsmanship, friendship. I can also hear sadness, frustration, panic and anger. What I find remarkable as I work in my office upstairs away from the day to day activities of kids, is the comforting sounds of staff. Respectful and caring, but firm, giving support and structure to those whose coping skills challenge them in school, with friends, with emotions and with stress. We help them navigate and find their place in the world, giving them the tools they will need to succeed and thrive. I think to myself as I listen, this is what I want families to know about Latham and why Latham gets it.
“Home is the nicest word there is.” ~Laura Ingalls Wilder
Thank you to all who participated in the 13th Annual Cape Associates Playhouse Raffle to Benefit the individuals at Latham Centers
During the months of June and October you may remember purchasing raffle tickets for the charming yellow replica of Captain Elisha Bangs' home on Latham Centers' school campus in Brewster built and designed by Cape Associates. Latham Centers had a goal of $10,000. For the raffle Latham Centers sold approximately 1,700 raffle tickets to some 600 individuals, raising $13,000. This number is truly astounding, and all ticket proceeds will help enrich programs and services for the children and adult residents living at the Latham School and Latham Residences. Your participation has helped to make the lives better for the individuals with complex special needs, including Prader-Willi Syndrome, who reside at Latham Centers. The highly anticipated winning ticket was drawn on October 21st, 2013.
Claudia and Bruce Drucker of Wellfleet, the winning couple, have been enamored by the detail of this replica since they first saw it on the side of Route 6 in Brewster. Annually, the Druckers have purchased raffle tickets for the Cape Associates Charity Playhouse Raffle, supporting a slew of non-profits on Cape Cod. On Halloween Day the playhouse landed at its home in Wellfleet near town center. Gushing about how the design of the playhouse mirrors the design of her own home, she elaborates, "I plan on creating a garden of daffodils surrounding the playhouse, and working with my grandchildren picking stencils and paint for the currently unfinished interior. I look forward to when it will be fully furnished and an established part of our property." Click HERE to view the article from the November 7th, 2013 Provincetown Banner.
Visit www.lathamcenters.org/playhouseraffle to view all of the runner-up prize winners, or www.lathamcenters.org to learn more about Latham Centers.
To make an end of year donation to Latham Centers' programs, click HERE. Thank you again for your participation!
The Latham Centers Team
All the kids did a great job and I couldn’t be more proud of them. In the lead up to the competition, the students made it to all of the practices and supported each other. We were lucky enough this year to see and give high fives to several of the Patriots. Bob Kraft came out, and even Tom Brady spoke to the kids. This year the Patriots were heading off for an away game that would be seen on Monday Night Football but they took time to come out and say hi. All of us were so excited that the kids and staff got to see them. It was a dream come true for all of us!!!
Thank you Mary Ware for your amazing help throughout the season, and jumping in to play when we needed her. You’re an amazing leader and I’m so grateful for all your support. Thank you to Alanna Murphy and Emily Mann for coming to support the kids, and giving us a helping hand. They stuck with us all day, and it made the kids so happy to see them. Thank you Barbara for packing all the meds, and having them ready for us. Thank you again to all of the staff for helping these kids get here. It is an amazing experience I am grateful and honored to be a part of.
Annually we celebrate Thanksgiving, Black Friday, Cyber Monday and now it is time we celebrate together as the Latham Family, a Season of Giving.
Just around the corner is #GivingTuesday, December 3rd. This new day on the calendar is bringing together a network of generous and creative people who want to remind the world that the holidays are about giving back. The collective impact of their donations, voices, volunteer hours, and resources will help increase and enhance giving around the world.
To mark these momentous days, we invite you to give a year-end gift to Latham in honor of our students and adult residents with complex special needs. Your tax-deductible gift helps us to fund life-transforming programs for Latham students and adult residents like Evie T. Read her heartwarming story in our Annual Fund letter written by Evie's Mom--a new member of the Latham Board of Directors HERE.
Rest assured, your compassionate, philanthropic support on National Philanthropy Day, Giving Tuesday or any other time of the year, will help provide cutting-edge educational and program support for the amazing individuals who call Latham home.
As you can read, there are many ways to give with many important reasons. Want to learn even more? Have an advance peak at Latham's Fiscal Year 2013 Annual Report in the mail to our supporters now HERE.
Thank you for your online donation.
Prefer to mail your gift? Please make payable to Latham Centers at:
14 Lots Hollow Road
Orleans, MA 02653
Thank you for your kindness. All of us at Latham wish you a Happy and Joyous Holiday Season,
VP of Development & Community Outreach
P.S. Contact us directly to learn more at email@example.com or 774 353 9296 or firstname.lastname@example.org or 774 353 9126.
Latham Centers is traveling. Interest in our programs continues to grow exponentially as awareness of the services we offer extends beyond our state's borders. Recently Latham participated in the PWSAUSA National Conference, both as a sponsor and presenter. Our booth was active with families seeking information and support for their loved ones with Prader-Willi Syndrome. We also caught up with old and new friends as well as other providers and medical professionals supporting families on this journey that we share. The following week, Patrice headed to NYC to attend the FPWR (Foundation for Prader Willi Research) Gala where the focus shifts to PWS research and a celebration of many successful fund-raising benefits held throughout 2013. This event shines a light on the growing work of FPWR around the world in their support of PWS research. Finally in our on-going efforts to get the word out to educational consultants across the country, Latham participated in the IECA (Independent Educational Consultants Association) Conference. As a member of ISPA (Independent Small Program Alliance) Latham shared information about the great work being done in our programs on Cape Cod and invited them to come and see the transformative work being done by our students and staff. All in all, a busy, but productive 10 days!
If we somehow managed to miss meeting you, just give us a call or send us an email. Questions on admissions or a program visit should be directed to: Susan LaPlant
In New England preparing for winter typically means snow tires, weather proofing windows and stocking cabinets but there is more to consider if you have a child with PWS.
- Be mindful of the change in daylight. If your child has spent the first two months of school waking up with the sun and now suddenly has to wake and get ready in the dark you may see a change in behavior. Even slight changes in routine and environment can cause havoc and if your child cannot tell time he or she may rely heavily on how light or dark it is outside.
Children and adults with PWS are more susceptible to hypothermia. This is especially problematic because most cannot accurately report pain or discomfort which are the first signs of cold weather related illnesses. Pay close attention to skin color, texture, behavior and time spent outside in the cold. Direct exposure to freezing temperatures should be extremely limited.
Cold weather brings dry skin which brings temptation. When skin is dry it becomes itchy and this is when we see an increase in picking. This is also true for chapped lips. Use plenty of lotion and chap stick to reduce cracked and itchy skin.
Have a pre-planned routine for snow days. There should be a written schedule that can be presented to your child ahead of time in the event that school is cancelled. Because we often do not know until the morning of, we can't let our kids know ahead of time which is ideally how we handle this kind of a change.
We'd love to hear your ideas for getting through the winter months!
Manager PWS Services
Transitioning to Winter
A Winter Landscape
Greetings From Facilities!
"Welcome, winter. Your late dawns and chilled breath make me lazy, but I love you nonetheless." ~Terri Guillemets
On October 26th, we held a Community Clean-up Day on the property, which was a resounding success! The weather was spectacular. We had over 40 participants and everyone seemed to enjoy themselves. We started the day hopeful, and after coffee and donuts, headed out to take back the land from the weeds. Our maintenance department was there in full force directing our efforts, and we had wonderful support from Latham staff, board members, friends from the community, and some very special help from Police Chief Koch; Fire Chief Morin, and Town Manager, Charlie Sumner. Many brought chain saws and we rented a chipper, all of which really helped us get the job done. Our rubbish removal company, M.A. Frazier, donated a large dumpster, as well as Chase and Merchant of Dennisport, which we quickly filled. We had a great lunch from Café Alfresco , including hot dogs, sandwiches and cookies, delivered by our VP of Development and Community Outreach, Gerry Desautels, and by the end of the day, we had completely taken down all the overgrowth that surrounded the buildings.
Thanks so much to all who made the day happen!
Stay tuned as we solidify our plans for the property to benefit the children and adults in our programs.
Latham School of Brewster invites the public to a student art show on display the month of November in the auditorium of the Brewster Ladies’ Library. The colorful show features work by more than 30 students created during Latham School’s Summer Program. The exhibiting student artists attend school year-round at Latham’s residential campus specializing in the treatment of complex developmental, emotional and physical special needs, including Prader-Willi Syndrome. A student reception open to the public free of charge will be hosted by Latham on Friday, November 15th from 3:30-5:30 p.m. in the Brewster Ladies’ Library Auditorium.
The work represents hands-on art rendered as students gained an entry point into understanding works of the Masters—from the Italian Renaissance into major players of American modernism. Portraits, landscapes, collages, mixed media, and watercolors works are all represented in this experiential group portfolio created with inspiration from luminaries such as Matisse, Andrew Wyeth, Picasso, and others.
The Brewster Ladies' Library is located at 1822 Main Street/Route 6A in Brewster. Hours of operation, including viewing access of the Latham Summer Art Show are: Tuesdays & Thursdays 10:00 a.m. – 8:00 p.m.; Wednesdays, Fridays & Saturdays 10:00 a.m. – 5:00 p.m., and Sundays 1:00 – 4:00 p.m. The library is closed November 11 (Veteran’s Day) and November 28 and 29 (for the Thanksgiving holiday.)
Resilience is the word that comes to me when I think of these events. The ability of a person to overcome an obstacle; to not allow circumstances to defeat them. I have the pleasure of working with children and adults who are resilient. They don’t accept their challenges as failure, they figure out how these genetic or emotional “setbacks” can be transformed into successes. It’s a partnership that requires both parts, program and person, to see the potential for positive outcomes and work towards achieving them. If there was a world series in life, our students and adults would have their own duck boat parade!
Latham Friends at Fenway!
Tropical New York
Latham was Represented
“Ninety feet between bases is perhaps as close as man has ever come to perfection.” ~Red Smith
Traveling with typical children can be a challenge but traveling with kids with PWS brings another level of organization and worry. From meal planning to ensuring meds like growth hormone remain cold throughout your trip, traveling PWS style is no easy feat! Here are some ways to make the trip a little easier:
- Contact your pharmacy or pharmaceutical company to get a cold pack designed specifically for GH injections. These packs keep the med cold for 24 hours. If your flight or travel is expected to be very long you can ask the airlines ahead of time to refrigerate your med pouch during the flight. Most airlines will allow this. If traveling by car bring a cooler designed for long term use.
- Get all of the info regarding meals ahead of time. If your travels bring you to a PWS conference then this part is relatively easy because any conference with a children's program will have this done for you ahead of time. If not get menus off the internet to be sure they are up to date.
- Plan snacks, preferably non-perishable ones and have them already portioned out.
- Allow your child to be a part of the trip planning. Have something they would like to do at the end of each day to make the not so fun stuff more tolerable for them.
- Use social stories to help prepare for unexpected changes. "Sometimes flights get delayed and we will have to sleep somewhere else/ eat a different meal than we planned for/not see grandma for another day and this is ok, this is not something we can control". A story along those lines can really help your child prepare to be flexible but the stories need to be read ahead of time and not in the moment.
- Remember to keep your affect and emotions under control. If you are upset, your child will be that much more upset. Stay calm and remind yourself that this is different and everything cannot be perfect or exactly as you planned.
- If your child is going through a challenging time or if the trip will have few chances for leisure such as a funeral or other family event that will be stressful, find a way to leave your child home. It is ok. The best parenting decisions are those that put your child's needs first and ignore what others may think. Family may not understand your choices but your priority is what is best for your child.
Manager PWS Services
De-cluttering the Atmosphere
The Road Trip
Latham Adults Evacuate the Cape
“Make voyages. Attempt them. There's nothing else.” ~Tennessee Williams
We should all pause to try and listen more and learn from each other. I am as guilty of this as anyone else. This is particularly where a power differential exists within a stratified hierarchy such as ours. Whether between staff and clients or between staff and management or even within management. We all need to pause and listen and come away with true understanding. Our relationships will be richer and our combined efforts will be both rewarding and more effective. We will all learn more.
“There's a lot of difference between listening and hearing.” ~G.K. Chesterton
Community. Personal and professional ties to people and place. A sense of belonging and camaraderie that over-ride the urge to burrow under flannel sheets and hibernate until Spring. Living and working on the Cape is a challenge, but it is also a privilege. Gone are the crowds, long lines, traffic jams. The remaining residents manage to find ways to gather together and celebrate their communities and the shared or diverse heritage of its’ members. There is always something going on here.
The same holds true for our Latham community. Last weekend, one of our own was featured in a community theater production at one end of the Cape. Her co-workers gathered in numbers to cheer her performance and let her know how talented she is. Our individuals were in residence and in costume at a bowling event while students gathered in the evening around a fire pit in the cool evening of a beautiful Fall day. Being part of Latham means you are part of a caring and active community and while it may not be a beach day, it is after all, a Latham day somewhere.
True Community Success Story
Connections to Community
Every Month, a Community Celebration
“Unless today is well lived, tomorrow is not important.” ~Alan Sakowitz