Friday, March 29, 2013

TIP of the WEEK: PWS? A "To Do List" for New Parents

We regularly receive calls and emails from parents asking for advice. Advice about behavioral issues, medical needs or guidance for placement funding. There is no formula or checklist to guide parents through this overwhelming maze but there are basic things to know and do at each stage. Although some children are diagnosed later in life, nowadays the vast majority of children are diagnosed within days of birth. Here is our “to do list” for those new parents who are brand new to the PWS world:

  • Allow yourself to have your feelings but know that you have been given a gift, not a burden. Your life will be different but good, really good. Turn to your family for support but only if they are helping. Negative comments and pity are not helpful and serves no purpose for you. Don't let that in. Ask for help and accept it every chance you get.
  • Reach out to parents of toddlers. Parents of infants are just as overwhelmed as you are and parents of older children may not remember the details of those first few months. Parents of toddlers have just been where you are now.
  • Stay off the Internet! Most of the information is outdated or sensationalized. Stick with publications or websites of trusted programs and groups. Ask families or ask us, there is good info and support out there for you.
  • Find an endocrinologist, OT, GI doctor and PT that either are experienced with PWS or are very willing to learn.
  • Take time for yourself. You are no use to anyone else unless you are rested and healthy.
  • And most importantly, enjoy your baby. He or she may not hit their milestones at the same time as the books predict but they will reach them. They will make you laugh and bring you as much or more pride than any other child would. Show them off, brag about them and have fun. Ask questions, call for help and keep calling until you get the answers that you need and relax.
Remember one of my very favorite quotes:
"Everything will be ok in the end. If it's not ok, it's not the end". - Paolo Coelho

We are always here for help or just to listen. Don't hesitate to reach out!

Patrice Carroll
Manager of PWS Services

Wednesday, March 27, 2013

Mark Your Calendars

What’s coming up at Latham in the next couple of weeks? Lots going on, that’s for sure! Take a look……

School Assembly 

 March 27th                      2:15-3:00             
  • Student Council will have a brief presentation with our P.E teacher explaining the “Fuel Up to Play Sixty” program.
Professional Development                    
March 28th                       2:30-4                    
  • Teachers will be exploring the IEP process, with the para-professionals practicing specific crisis situations.Two Teachers will be assisting the residential program developing cross-component curriculum
Spring Concert                                 
March 29th                      12:45-2ish           
  • Come and see our wonderful musicians perform on their recorders, sing and see some ballet as well!)
Community Meeting                     
April 3rd                           2:15-3                   
  • The Latham Community comes together to celebrate the past month’s success.
Early Release                                    
April 11th                         1:30-3:00             
  • More staff Professional Development!
April M. Grad.                                   
April 12th                   1:30

April Vacation                                   
April 15th - 19th                                

Brewster in Bloom                          
April 27th                        All Day                 
  • A Saturday affair in which students will sell handmade crafts. Latham will be well-represented in the annual community arts and crafts fair.
Hope to see you there!

Gerry Pouliot
Assistant Principal

Friday, March 22, 2013

TIP of the WEEK: Giving Back

I often hear parents and providers say that they don't attend PWS conferences because they don't learn anything new so what's the point of going. I think back to my first conferences and remember how much I was embraced by the community and how warmly I was welcomed into this small but mighty group of staff, families and doctors. The support that I received as a new person stepping into this confusing and sometimes frightening syndrome is why I encourage people to go to any and every conference that you can go to. You may be a veteran parent or a provider who thinks that you know it all (which I will tell you right now, you don't and never will) but consider your first years, days, and minutes and remember how overwhelmed you felt. It was the support of those who had been there and survived that got you through, that gave you hope, and now it is our turn. Our turn to show parents that their lives may not be how they planned but it will still be a wonderful life. Different, yes, but full of love and pride and really good days. It is our responsibility to give back for all of the support we received and attending conferences is the perfect forum to meet and help and yes, learn. I have been attending PWS conferences for the past 12 years and I have never walked away without learning something, and usually a lot.

Another reason to attend the next several conferences is because Latham is presenting quite a bit over the next few months! In New York we will be presenting on the extensive work we have been doing with sensory integration. In England, a conference that has very few presenters from the US, we are presenting twice! To end the conference season we will be hosting our own conference and then presenting at the national conference in Orlando. Conference organizers always look to Latham to present at their conferences because of our extensive experience and expertise and that is a pretty great feeling. It is also a chance for us to reach out and let new families and providers know that the beginning of the journey may be scary but really cool things happen along the way and no matter how bad things feel, it is worth every minute of it!

Submitted by:
Patrice Carroll

Thursday, March 21, 2013

An Average Day: Clinically Speaking….

I had the pleasure recently to talk with one of Latham’s excellent clinicians in the Children’s Program, Melissa Hyer. I wanted to understand better what the “average” day was like for this group of staff who work so closely with students to help them deal with the sometimes overwhelming challenges they face.

Our clinicians are typically assigned to 7 or 8 students. Melissa currently has 7 on her caseload and she meets with each of them at least twice a week for 45 minutes to an hour.  In addition, each clinician meets weekly for one hour with a group of students to work on social skills. These meetings often start with a mindfulness exercise and a validation, where students identify something positive about themselves and also about another student. An activity like role-playing might be used to work on communication skills, how to be respectful and kind and how to positively stand up for yourself.  

Clinicians use several types of therapy with individual students including art therapy, play therapy and cognitive behavioral therapy. When Melissa meets with one of the children on her caseload, she reviews significant events that have occurred and reinforces coping skills. Sometimes family therapy occurs as well with parents.

Melissa and the other clinicians work closely with residential and school staff and multi-disciplinary team meetings are conducted weekly. Each student has a behavioral support plan that is reviewed by the team quarterly and sometimes more frequently, as needed.  It’s at these meetings that the team gets together to discuss what interventions are having a positive impact on behaviors and what the current challenges are.

Latham Centers has an extremely dedicated clinical team who play a vital role in preparing our students to lead meaningful, abundant lives.

Submitted by:
Barbara Culver

"Next to excellence is the appreciation of it."
~William Makepeace Thackeray

Wednesday, March 20, 2013

Spring is March 20th…Seriously??????

Philly Snow Storm, Dec. 19, 2009

I went to walk the dog last night and a very nasty word passed my lips when I turned on my outside light. Seriously, snow AGAIN???? I thought we were beyond it but obviously Mother Nature is enjoying torturing me. Out came the boots, scarf, gloves and hat this morning. The car, covered in its blanket of white needed scraping and the roads were a delight, if you like driving as a sport rather than a necessity.

We know that the coming of Spring is really a joke on the Cape. I see photos of what it is supposed to look like. I remember growing up in NJ and we did have that green season, but the reality is that we could just go from winter to summer here on the Cape. It feels like that at any rate. And yet, gleeful shouts greet me as I arrive at Latham this morning. Kids being kids, look at the white stuff so differently. The students with complex special needs we support at Latham School are no different than their public school counterparts. They want a Snow Day!  I remind myself to pause, take a deep breath, live in the moment and look around.  It is pretty, it does look like a painting, it ….is leaking into my UGGS.

Submitted by:
Chris Gallant

"Spring is sooner recognized by plants than by men." 
~Chinese Proverb

Monday, March 18, 2013

Getting Out of My Own Way

My mind can be a messy place.  I am multi-tasking myself into oblivion. Before iPhones, I had a small calendar in my purse that I would actually write things into. And if I am perfectly honest, I didn’t need to record every last thing. I actually could remember where I had to be and what had to be done. No more. My “balance” is off. Maybe it’s age, maybe too much is going on, but now I am constantly playing catch-up or worried I missed something. I drive with less patience than I should and it has nothing to do with being from Massachusetts!  Whatever the reason, I need to get back to basics.

Mindfulness. Being present, really present, in each moment. I have gotten away from a foundational belief that we at Latham champion. In turn, I must look pretty stressed out to our students and staff. So, I am getting back to those things I know make me feel better: slowing down, taking deep breaths, focusing on one thing, appreciating the view outside my window, pushing back from my computer and stretching out the kinks. If we don’t take care of ourselves, we can’t do a good job of caring for others.

I found the following information on mindfulness from the Benson-Henry Institute of Mind Body Medicine at Mass General: "Mindfulness is the miracle by which we can call back in a flash our dispersed mind and restore it to wholeness so that we can live each minute of life." Thich Nhat Hanh. The Miracle of Mindfulness is the practice of paying attention to what is happening to you from moment to moment. To be mindful, you must slow down, do one activity at a time, and bring your full awareness to both the activity at hand and to your inner experience of it. Mindfulness provides a potentially powerful antidote to the common causes of daily stress such as time pressure, distraction, agitation, and interpersonal conflicts.

10 simple ways you can practice mindfulness each day:
  • As you awaken in the morning, bring your attention to your breathing. Instead of letting your mind spin off into yesterday or today, take mindful breaths. Focus on your breathing, and sense the effects of breathing throughout your body.
  • Instead of hurrying to your usual routine, slow down and enjoy something special about the morning: a flower that bloomed, the sound of birds, the wind in the trees.
  • On your way to work or school, pay attention to how you walk or drive or ride the transit. Take some deep breaths, relaxing throughout your body.
  • When stopped at a red light, pay attention to your breathing and enjoy the landscape around you.
  • When you arrive at your destination, take a few moments to orient yourself; breathe consciously and calmly, relax your body, then begin.
  • When sitting at your desk or keyboard, become aware of the subtle signs of physical tension and take a break to stretch or walk around.
  • Use the repetitive events of the day - the ringing telephone, a knock on the door, walking down the hall - as cues for a mini-relaxation.
  • Walk mindfully to your car or bus. Can you see and appreciate something new in the environment? Can you enjoy walking without rushing?
  • As you return home, consciously make the transition into your home environment. If possible, after greeting your family or housemates, give yourself a few minutes alone to ease the transition.
  • As you go to sleep, let go of today and tomorrow, and take some slow, mindful breaths.
By following the main elements of mindfulness - combining awareness of your breath with focusing on the activity at hand - you will be able to experience every moment as fully as possible.

Submitted by:
Chris Gallant

Friday, March 15, 2013

TIP of the WEEK: The Beauty of the Unknown

I have a very long commute to and from work, 4-5 hours per day and no amount of satellite radio or audio books can deny that that is a lot of time to spend in the car. So recently I have started staying on cape a couple of nights per week to save my mind, body and soul the toll of too many hours spent in the car. So now, instead of spending my early mornings driving, I now spend them here:

Not a bad way to spend a morning! The power, mystery and potential destruction of the ocean is not lost on me but I choose to see its constant change as exciting; her limitlessness and inexhaustibility as inspiring and I wonder why we cannot do this more with our kids. We spend so much time trying to solve their issues to break the cycle of what we think of as bad behavior, extinguishing habits that we consider socially unacceptable. We often fail to see the beauty. That these kids have the endurance to wait for, advocate and insist on something when they want it badly enough, that they can charm and melt the heart of just about anyone and can learn things that people have been telling them were impossible their whole lives. So we can either focus on what is dark and confounding or focus on what makes these kids amazing. I choose amazing.

Submitted by:
Patrice Carroll

Wednesday, March 13, 2013

It a Hoe – Down! LATHAM STYLE!!!

Latham kids and staff celebrated sunshine today by participating in a West Wing hosted Hoe – Down.  Donning cowboy hats and smiles, students and staff played various games and won some prizes.  While winter may not be officially over yet, everyone celebrated the approaching spring with enough enthusiasm and warmth to melt any amount of lingering snow and ice. 

Submitted by:
Roger Boucher

"There are short-cuts to happiness, and dancing is one of them." 
~Vicki Baum

Monday, March 11, 2013

Whether the Weather Will Change Us Forever

Latham Centers happily resides in one of the most beautiful places on earth. I know, I know, enough about the splendors of Cape Cod already....but right now, our fragile peninsula is under attack by Mother Nature and boy she is not happy. Parts of our topography will be different by morning. Breaks through and over sand dunes have brought ocean water into new environments. We will have different beaches to visit this summer and we have lost some beach access forever. Houses that overlooked acres of sandy expanse are finding themselves dangerously close to teetering off their foundations. I’ve lived here for 36 years and the beaches I took my children to may no longer be there for my grandson. Change is hard. And yet, we here at Latham are chugging along. Routine and structure are our foundation and in spite of the mess outside, the students know what time their classes are, what the activities of the day will include and what’s for dinner. Simple things, but reassuring. We know that anxiety is not our friend. While we can’t control what is going on outside of our windows, inside, Latham is cruising along in the calm zone!

Submitted by:
Chris Gallant

images courtesy of Addison Art Gallery (above)
and the Cape Cod Times, Steve Heaslip (right)

Friday, March 8, 2013

TIP of the WEEK: All About Bowel Movements: What's the Poop?

The truth is, if you have or work with a child with PWS you need to push past the yuck factor. You will see and become personally acquainted with bodily functions in a way that you never thought you would. You may not want to. You may be uncomfortable or squeamish but you need to pay attention to bowel movements. Close attention. The frequency, lack of, and consistency of bowel movements can tell you a lot about the overall health of your child. At Latham we use the Bristol stool chart to monitor the children's bowel movements (above).  Lack of bowel movements or loose stools can indicate a problem of the GI tract and these problems can be quite serious in the child with PWS. Many doctors will not take it seriously if you report a recent change in bowel movements which is why it is essential for your child to have a doctor who is knowledgeable about the syndrome.

Gastroparesis is a condition that reduces the ability of the stomach to empty its contents, but there is no blockage and this condition can have serious complications. Symptoms include a change in bowel movements, abdominal distention and foul smelling gas. Watching and being familiar with your child's bowel movements will give you an early indication of a potential or building problem in their GI tract. If you are looking at the Bristol chart, which picture do you think is the ideal?
(Answer: #4)

Submitted by:
Patrice Carroll

Tuesday, March 5, 2013

The Cactus Perspective

While my colleagues were digging out from three successive snowstorms last month, I was enjoying a respite in beautiful Tucson, Arizona. There is much to compliment Tucsonians for. They have spectacular weather, gorgeous scenery, farmer’s markets in February and a very laid back lifestyle (If only there was an ocean it would be perfect).  What it also has is a gem of a residential program working with adults with Prader-Willi Syndrome.

I had the pleasure of visiting the Tucson Residence Foundation and meeting with Program Director John Cunningham. Like Latham, this program found its mission in the early 1970’s serving adults with developmental disabilities. They have a small program that focuses on PWS and it was a delight to talk with knowledgeable professionals about the joys and the challenges of our shared interest. John offered to give me a tour of one of the homes they manage that supports individuals with PWS. I jumped at the chance to see how they do it in the Southwest and compare it to our program. Not surprisingly, our programs were so similar that except for the cactus, I could have been back here on the Cape.

When I see something good out there, even if it isn’t ours, families and professionals working with PWS should know about it. So thank you Tucson Residence Foundation, it was great to meet another non-profit supporting adults with Prader-Willi Syndrome! And I also would like to include a huge thank you to the staff that worked here during the recent storms that seemed to never end.  I know the children and adults felt safe and cared for by all of you during a very challenging month!

Submitted by:
Chris Gallant