Monday, September 30, 2013

The Support Factor

Aging stinks. Normally I would use a different word but that would be "inappropriate” as the kids love to remind me when I mess up. Apparently my joints got the memo that summer is over. The idea of running up a flight of stairs is about as likely as me playing for the Red Sox. So, I need to make some accommodations in my life, something our students and individuals are quite familiar with. In the grand scheme of things, this is a minor inconvenience. I heard a report earlier this week about a cancer study which indicates that the support system that surrounds a person is as important as the treatment they are receiving.

As I slowly climbed the stairs to my office, one of our students offered to help me with my “heads” (another story, another time, I promise). And in that moment, I felt better.  I have no hard numbers for you, but it is in my humble opinion that one of the reasons Latham is successful working with children and adults with PWS and other complex special needs is because we have a caring community here. It’s not just that the staff “gets” PWS; everyone here “gets” it. We are each other’s support system and it makes a challenging life more manageable and frankly, more fun. Looking around my work world is reassuring to me that we are on the right track. I can only hope the rest of the world follows our lead.

Submitted by:
Chris Gallant

Related Posts:
Top Ten Reasons Latham Excels in PWS Residential Placement
Latham Individuals Speak with Students
Autumn of Cape Cod: A Transitional POV

“No one is useless in this world who lightens the burdens of another.” 
 ~Charles Dickens

Friday, September 27, 2013

TIP of the WEEK: What About the Rest of the Family

Parents of children diagnosed with PWS have an extraordinary challenge that takes never ending patience, an understanding of medical issues that rivals the best doctors knowledge and fearless advocacy. But what about the rest of the family? Siblings and spouses need you just as much and sadly they often take a back seat to the needs of the child with PWS. Here are some ways to create balance in your and their lives:
  • 1. Have consistent expectations. If your typical children have chores and standards of behavior then so should your child with PWS. If you want your child with PWS to be an active and valued family member then they too should have chores and consequences just as your typical child does. Without this you will create an unnecessary environment of resentment and hostility towards your special needs child. Just remember that fair does not mean equal. Expectations may not be the same but they must exist. A well made bed or a set table may look different and that's ok as long as similar tasks are being asked of both children.
  • 2. Give your non PWS children a safe place to talk about their feelings. Online support groups or sibling groups in person exist although they may be difficult to find. Start your own or at least encourage your children to connect to other siblings at conferences or local chapter meetings.
  • 3.  Let your kids come up with their own strategies to cope with behavioral issues with your approval. They will be more apt to become involved with a solution if they were part of its creation.
  • 4. Make time for them. So much of your time goes to your child with PWS. Be sure that at least a few minutes a day goes to being alone with your other children. This is hard, I know, but so important.
  • 5. Watch for splitting or in fighting after behavioral outbursts. It is so easy to feel out of control and blaming everyone else is often easier than feeling helpless to the syndrome. People make mistakes but more often than not it was the anxiety or inflexibility of the syndrome that caused the outburst, not your spouse, their teacher, the lady at the grocery store, etc...
  • 6. If you have a spouse then date nights are probably ancient history. You may not have time or the resources to leave your kids for a night but don't forget to validate their feelings. If you're a mom then you probably do the majority of the work and attending to the needs of anyone aside from your kids seems impossible. Try to make an hour in your week to connect with your spouse even if it's sitting in the backyard after the kids go to sleep. It is important for you as a team to regroup and remain a united front.
You have a remarkably hard job that can be made easier if the whole family works together. Don't forget to ask for help and take every chance you get to take a deep breathe and think great thoughts!

Submitted by:
Patrice Carroll,
Manager of PWS Services

Related Posts:
Support for Siblings
We Do Not Walk Alone
Caring for Yourself

“Alone we can do so little; together we can do so much”  
 ~Helen Keller

Thursday, September 26, 2013

Finding Spirituality

When I came to Latham in 2004, it appeared to me that an effort to meet students’ needs was being made in all areas except the spiritual component.  I learned that there is often an issue with having enough staff to take students out into the community for Sunday morning services. Also, some students who would like to attend may not be able to go off campus at the time of the service. 

In an attempt to meet the spiritual need, we sent an invitation to several congregations in the area but only one pastor responded and his involvement was limited. Some months later, we invited a lay minister from a local Episcopal church to conduct a Taize service on our campus.  Taize services are mainly sung, and are repetitious and meditative.  The service is held in the evening and generally has a calming effect on our students.   These services have continued and are ongoing.

At around the same time, I attended a meeting of the Nauset Interfaith Association to tell them of our needs at Latham and got a good reception.  Soon after that, our executive director gave me the name of someone to contact from a local Roman Catholic parish. We met with her priest and the ladies’ guild and composed a liturgy. They led a couple of services a year so by this time, we were holding approximately four nondenominational services on campus each year. 

At the recommendation of another lay pastor who visited from the Episcopal Church of the Holy Spirit in Orleans, I returned to the Nauset Interfaith Association earlier this year. Once again, several congregational leaders responded favorably.  This time, the seeds that were planted bore fruit.  We now have Unitarian, Christian and Jewish congregations involved in a regular rotation providing monthly services on Tuesday evenings in our school library. We also take students to Sunday services whenever possible.

These services provide a variety of experiences of the Holy for our students and are open to all on a voluntary basis.  These informal, ecumenical services provide opportunities for our students to sing, dance, and play instruments. They are also places where they can share their experiences of joy and of sorrow and to ask and discuss difficult theological questions.

Our students can experience the prayerful, meditative Taize by the Church of the Holy Spirit to the rousing finale that concludes the service given by Our Lady of the Cape during which our students dance the Irish jig with Fr. John.  At a service led by the Am HaYam Cape Cod Havurah, some of our Christian and secular students experienced the beliefs and practices of the Jewish Faith for the first time. Different types of worship have been offered by the Unitarian Universalist congregations of Provincetown and Brewster.  Our latest service was held on Tuesday, September 24th by the United Methodist Church of Chatham, led by Rev. Nancy Bischoff, also a member of the Latham Board of Directors.  Rev. Bischoff led “camp church” outdoors around a campfire attended by more than 20 students and accompanying staff. Her energy, humor and enthusiasm were contagious and appreciated by the attendees. Her inventive sing-alongs were accompanied by a volunteer guitarist, leaving the kids wanting more. While it was a hard ”act” to follow, monthly services will continue and have all been scheduled with other ministry groups through the end of 2013. 

Submitted by:
Brooke Eaton-Skea
Latham School Clinician

“The spiritual life does not remove us from the world but leads us deeper into it” 
 ~Henri J.M. Nouwen

Tuesday, September 24, 2013

Staff Shine at the 2013 PWS Conference - Best Practices: Our Shared Journey

I am so proud of the staff we have at Latham! I was sitting in the audience at the Prader-Willi Syndrome 2013 Conference hosted by Latham Centers, Advocates & PWSANE on Saturday when it was time for the panel presentation on residential issues and questions. Let me say that the team on stage, our own Holly, Travis, John, Melinda and Rachel, reflected the best that Latham has to offer and represented the agency and all staff with grace, compassion, humor and wisdom.

Families expect much from programs like ours. They should. We are caring for the thing most precious to them, their child. What I, as a parent and a professional, saw and heard filled me with pride for the team on stage and for the staff working in our programs and departments day in and day out. Commitment to our mission, a belief that the work we do is important and that relationships matter.  It doesn’t get any better than that.

Submitted by:
Chris Gallant

Related Posts:

PWS International Caregivers Conference
PWS Conference, Orlando 
The PWS National Conference, A Personal Perspective 

“As we work to create light for others, we naturally light our own way.” 
 ~Mary Anne Radmacher

Friday, September 20, 2013

TIP of the WEEK: Emergency Preparedness for PWS

As September is emergency preparedness month and to add on to Susan's previous post I wanted to talk about this specific to PWS.
  • Medications- the general belief is to have an extra months supply of meds in hand but many state funded insurance companies do not allow for this. Talk to a representative from your child's insurance company and explain that you need a one time allowance for an extra month of medications. Many parents have been successful doing this.
  • Food supplies- it would not be difficult for a typical person to live off of canned or prepackaged foods for a few days but for the person with PWS this could be an extreme challenge. Have an " emergency menu" and make sure your kids know that in the event of an emergency their diet will change for a short amount of time and be sure they know what that menu will look like.
  • Activities- do not be left without activities for the possibility of loss of power. Puzzles, word search books, coloring books and hand held games are perfect but be sure that they are new and not part of their typical activity choices.
It is never easy to prepare for an emergency and adding PWS to the mix makes it that much harder. Plan ahead and the experience will be a lot easier.

Submitted by:
Patrice Carroll
Manager PWS Services

Related Posts:
Are You Prepared?
Learn First Aid and CPR 
Bad Weather is Scary 

"The time to repair the roof is when the sun is shining." 
~John F. Kennedy 

Thursday, September 19, 2013

Are You Prepared for an Emergency?

I just attended an Emergency Preparedness training sponsored by Kennedy Donovan Center here on the Cape. As a parent, I am thoroughly unprepared to handle an emergency should one arise. I would be running around with my head cut off and I know I’d miss some very important items that my family would need. As a parent of two special needs kids, I really need to prepare ahead of time. The good thing is that it's not too late, unless you live in Boulder Colorado where floods are requiring evacuations as I type. With all the weather changes and disasters we’ve seen; Katrina, tornados, hurricanes, and even Nemo here on the Cape, there is a real possibility that any one of us could need to evacuate or deal with less than our normal resources. Here are some tips I learned today.

1. Know where your emergency shelters are if you should need them and know what to bring.  
  • If you have a pet, check beforehand if they have a place for them
  • Bring an extra set of clothes
  • Bring a pillow
  • Bring medications you will need (in child proof bottles)
  • Bring medical equipment, CPAP, cane, walker etc.
  • Bring specialty food items you might need (gluten free, low fat snacks etc.)
  • Bring chargers for your cell phone
  • Bring a radio & extra batteries
  • Bring items to entertain yourself and kids (board games, cards, coloring books, IPods, sensory items, favorite blankets)
  • Bring toiletries (shelters may have these, but good to bring your own if you can)
  • For young kids bring diapers, formula, wipes, etc.
  • If your child uses a communication system, bring it along or bring pictures
  • It was suggested to bring a social story if your child has disabilities and would just not understand what is happening.
  • Not required, but you could bring an air mattress
  • If you are talented, bring a willingness to use it (i.e. guitar or other instrument)
  • If you do have special needs, please communicate that when you check in. 
2. Have a plan for your home. 
  • Plan and prepare 2-3 days out before the storm hits if possible.
  • Have a weeks worth of water on hand and non-perishable food items
  • Other items to keep in a safe place, LED flashlights, extra batteries, consider a head lamp if you will need both hands to help children or have a disability yourself, a small lantern, pack zip lock bags, have a car charger or an alkaline cell charger for your phone, pocket utility knife, a pocket d-icer (in case your car lock freezes), can opener, maybe an extra pair of glasses, pencils (they don’t run if it gets wet), walkie talkies to communicate with neighbors who might need to be monitored, a radio, first aid supplies, keep a copy of medical notes in the pack, baking soda for washing, charcoal water filters, etc.
  • Have a support network, not just one person including friends, coworkers, and family members.  Make sure they have numbers and know where you will be going.  Make sure you know where they are as well.  
  • If you can afford it maybe get a generator.
  • If you do leave your house, turn on your outside light so that emergency personnel can determine when the power comes back on to your house.
  • Remember to lock all doors and windows if you do have to leave. 

3. If you have a pet and are allowed to bring it to the shelter, bring…
  • Food—put dogs name on it and instructions as to how much and when they eat
  • Medicine, again with identifying information and instructions.
  • Treats
  • Toys
  • Non-retractable leash
  • Collar with identity tags and rabies certification.
  • Be prepared to care for your pet, feed, walk etc.  There may be personnel overseeing the animals and they will do this if you cannot, but it’s better if you can.

Emergency personnel were challenging us to do what we can to help ourselves, and if we need help, please reach out for it.  If you end up in a shelter, bring a willingness to help, supervise children at all times, and bring your sense of humor.  It’s in working together that we can all best help one another. Here is a picture of my starter kit I received today. And I leave you with a challenge from me to start your own. 

Submitted by:
Susan M. LaPlant
Director of Admissions

Monday, September 16, 2013

Latham Friends at Fenway!

As the Red Sox charge through another season, our Latham students had a great opportunity to go behind the scenes at historic Fenway Park. While watching the game and touring the stadium, students simultaneously learned about the Red Sox deep roots in Boston. 

The energy in the air heightened. Foul balls were jumping out of the stadium and forceful hits were bouncing off of the Green Monster. Directly in front of the Red Sox dugout a group of Latham Students lean leisurely for a photo- an empty stadium behind them, with the grounds crew working the field. Two Latham students pose for a photo in the Press Box, peering down at the antiquity of Fenway Park, and SURPRISE- in each photo sits the miniature playhouse! With the help of digital photography enhancement, the mini-playhouse was also able to travel past the bounds of Cape Cod, and into the home of the Boston Red Sox.

Buy tickets to win the larger replica of Captain Elisha Bangs’ House, measuring 10’ long, 5’ wide, and 8’ high HEREOnly 5 weeks remain before the October 21st, 2013 drawing at our 4th Annual Charity Golf Classic, located at Ocean Edge Resort and Golf Club. One ticket can be purchased for $10 and 3 tickets for $20. All proceeds support initiatives for Latham individuals with complex special needs and Prader-Willi Syndrome, such as trips to Boston! Tickets are being sold through our community partners: MA Frazier in Wellfleet, Seamen’s Bank in Eastham, Sherwin Williams in Orleans, JoMama’s in Brewster, the Yarmouth Moose Lodge, and all Cape Associates branches (N. Eastham, Yarmouthport & Chatham.) Also, look for us at community events throughout September and October.

You can visit the playhouse, as well as purchase tickets for the playhouse at the Agway in Dennis, 686 Route 134. Read this week’s edition of Dennis’ The Register to find out more information about the partnership between Agway and Latham Centers.

Submitted by: 
Katrina Fryklund

Friday, September 13, 2013

TIP of the WEEK: Coping Strategies

One of the biggest challenges that we face is teaching our kids how to manage stress and anxiety effectively and appropriately. We can often look back after a behavioral incident and find that the root of the issue was a stressor that, in many cases could have been diminished with the right coping  skills. Coping skills are easy to learn but take an extended amount of time and practice to be put into use during times of distress. Many of our kids can fluently tell us what skills they have and can show us how to use them when at baseline but typically forget how to use those same skills when they are needed most. Over time, with continued practice, these skills start to become habit and eventually we do see them being used in times of frustration and stress. Start young and practice often and the results can be remarkable. Here are some of the most effective coping strategies that I have seen:
  • Taking space- the number one coping skill for kids who become easily overwhelmed and react aggressively. Teaching your child to recognize when he or she needs to walk away and defuse is an invaluable skill that will have life long benefits.

  • Creative Visualization- take note of places and experiences that bring your child joy. During times of stress talk to your child in detail about these places and, over time ask her to visualize these experiences on her own. This skill teaches decompression and mood stabilization.

  • Role Playing and Social Stories- these skills teach your child what to expect in different environments and situations. Anticipating potential stressors and having your child play their way through them before they actually happen can decrease their stress when the actual event takes place.

  • Deep Breathing-  in my opinion the most effective skill that we can teach. Deep breathing calms the body, clears the mind and allows us to face anxiety more effectively. It is difficult for children and adults with PWS to breathe deeply so games can be used to teach this skill. Blowing bubbles, blowing up balloons, etc... are good ways of ensuring that your child is taking a good, deep breath.

There are many skills that teach children how to calm themselves down but the key is to pick ones that work and practice them everyday.

We'd love to hear about some of the skills that you have found to be effective.

Submitted by:
Patrice Carroll
Manager of PWS Services

Related Posts:
Useful Tips for Managing Stress and Anxiety
Top Ten Strategies for Emotional Meltdown in Public 
Getting Out of my Own Way 

“There are no negatives in life, only challenges to overcome that will make you stronger.” 
 ~Eric Bates

Monday, September 9, 2013

Bon Voyage Brewster, and Hello Dennis! The Playhouse Moves to Agway in Dennis

Josh Wile, Vice President of Agway, assesses the replica of Captain Elisha Bangs’ house at its new location

After initiating a journey from Seamen’s Bank in North Eastham, and continuing up Cape to Brewster at the shared lawn of She Sells – The Ocean Edge Shop and JoMama’s, and ending today at Agway in Dennis on Route 134, the Cape Associates playhouse has toured an impressive portion of the Cape, inviting residents and visitors alike to view the playhouse, purchase tickets and learn about Latham Centers. Agway has been a community partner of Latham Centers throughout the summer, providing us with soil, planters and plants in which to beautify the custom-made Sea Captain's house replica while still in Brewster. Agway of Dennis is our latest on-site ticket sales and viewing site. The community-friendly business invites customers and curious families to visit their Dennis location in support of Latham Centers’ students and adults with complex special needs. 

Learn more of Agway's growth as a family-owned and operated business for two decades here. Between the help of the Cole family of Cape Associates and the Wiles of Agway, the Playhouse Project has been a highly inclusive community effort in which businesses from around Cape Cod have come together in support of Latham Centers and its challenged population. This upcoming week, look for an article in The Register, Dennis’ local Newspaper, in which Nicole Muller writes about the success of the Playhouse Raffle thus far, the move to Agway, and Cape Associates’ Annual Charity Playhouse Raffle.
The winning ticket will be drawn the evening of October 21 at the 4th Annual Latham Charity Golf Classic at Ocean Edge Resort and Golf Club. Tickets are 1 for $10 and 3 for $20, and may also be purchased online at Delivery of the house (which could easily double as a garden shed) is included anywhere on Cape Cod. Tickets are also purchasable at Sherwin Williams in Orleans (136 Route 6A), Seamen’s Bank in North Eastham (4355 Route 6), MA Frazier in Wellfleet (10 Kear Circle), and all Cape Associates locations (N. Eastham, Chatham, and Yarmouthport).

Submitted by:
Katrina Fryklund

Friday, September 6, 2013

TIP of the WEEK: Dental Issues with PWS

Dental issues in people with PWS often start at a young age and can last throughout adulthood. Thick saliva, picking at gums or the tongue, poor overall dental hygiene and rumination are all contributing factors. Low muscle tone and challenges with fine motor control make proper teeth brushing especially difficult. Here are some ways to start and/ or improve good dental health:
  • Using an electric toothbrush combined with mouthwash can help children and adults brush their teeth properly with minimal physical exertion. Using their favorite song to time how long they should brush for can also be helpful. Use stickers or small tokens to reinforce a job well done. This is a life long issue so teaching and rewarding good habits are very important.
  • Sensory issues may make teeth brushing uncomfortable and the use of vibrating oral products such as "chewlery" rings can help with the transition just before morning and bedtime routines.
  • Address canker sores immediately to avoid the temptation to pick. Topical analgesics can be used to decrease the pain associated with canker sores or any other discomfort in the mouth if your doctor or dentist agrees with the use.
  • If rumination is an issue for your child and no interventions have been effective, increase the amount of teeth brushing or use of mouthwash to several times per day or just after rumination occurs if possible. Please check with your dentist as too much brushing can damage enamel as well.

We want our children to be as independent as possible and often accept less than perfection for this reason. Dental hygiene is not the time to settle for less, because weak and unhealthy teeth can have adverse effects on overall health and quality of life.

Submitted by:
Patrice Carroll
Manager of PWS Services

Related Posts:
Musings of a Child Care Supervisor
Sensory Overload