Thursday, February 28, 2013

TIP of the WEEK: International Rare Disease Day

 
Today, the last day of February is International Rare Disease Day, when we acknowledge and honor the people living with and supporting those diagnosed with rare diseases. 

What is a rare disease? In the U.S., any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases.  (rarediseaseday.org)

I have spent the last 18 years almost solely devoted to those living with PWS and I cannot deny the frustration I have felt at times of the lack of awareness in our community. I have met champions of this cause; providers, doctors, parents, and teachers. I have watched their dedication and steadfast advocacy and have been in awe. We may be a small group and it can feel like no one else could possibly understand what you are going through but rest assured, there are not only people who know what you are experiencing but people who are passionately studying, researching and creating ways to improve the lives of people with PWS. If you don't know who they are, reach out, come to conferences, find or start a local chapter and if you are connected to the larger PWS community, reach out to those who are not and bring them in. We may be small but just look at how far we have come over the past 20 years! 



“Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”
 ~Margaret Mead

Wednesday, February 27, 2013

A Fish Out of Water


I am a fish out of water. Literally. I am in the desert for awhile and I am definitely an ocean girl. This makes for interesting looks I am getting from people around town. First, I don't dress like a cowgirl. No cowboy hat, no boots. I wear what I like and I can tell you that flip flops and capris in February isn't the norm here. I think I am experiencing those longer stares our kids get; you know the ones I am talking about. Sometimes I ignore them but today I look back and smile, inviting them to ask; where are you from? What transpired was a funny take on the game seven degrees from Kevin Bacon.... Strangers in a kosher deli, yes a kosher deli, connect Boston to New York, New Jersey, Dusseldorf, Amsterdam and finally Antwerp. We ate in the same kosher restaurant in Antwerp. Sometimes the stares lead to conversations and  connections. I left him practicing saying "wicked awesome."

Submitted by:
Chris Gallant

Sunday, February 24, 2013

TIP of the WEEK: Animal Therapy




Pam Nolan and I started Latham Centers donkey certification program this week. This means that in the next few months we will introduce donkey therapy to the kids in our children's program.

Donkey therapy has been used in our adult program for several years and has proven to be a wonderful resource for the adults that are involved. Animal therapy is a great and effective way to teach empathy, responsibility and appropriate boundaries. Before the donkeys will allow anyone to work near them they need to feel safe so the children and adults must first earn their trust. Earning their trust means being gentle, being reliable and letting the donkeys know that they are there to help them. I am very excited to introduce the kids to these sweet animals and I know that everyone will benefit from this new relationship.

Submitted by:
Patrice Carroll
Manager of PWS Services

Thursday, February 21, 2013

Latham Centers Receives 16 Runner Spots in 2013 New Balance Falmouth Road Race


It’s official! Latham Centers will participate for the second consecutive year in the Falmouth Road Race, Numbers for Nonprofits Program.  As a selected charity beneficiary, Latham has received 16 runner fundraising spots (up from 10 in 2012) for the 41st New Balance Falmouth Road Race on Sunday, August 11, 2013. The New Balance Falmouth Road Race is a scenic 7-mile course from Woods Hole to Falmouth. In 2012, 10 runners raised a combined $10,000 for Latham on behalf of our children and adults with complex special needs.

Similar to 2012, Team Latham 2013 runners will receive coveted Road Race entry numbers from Latham in exchange for a $1,000 minimum fundraising threshold. More details will follow, but if you have an interest in running or know of someone who would like more information, please contact:

Gerry Desautels
Latham Centers
VP of Development & Community Outreach
774-353-9296 or
gdes@lathamcenters.org

The first step in the process is to file a letter of intent with Latham while agreeing to raise or be responsible for the $1,000 minimum requirement.  Upon acceptance, Latham will assist all Team Latham runners with a social media page to raise funds online. Latham will also cover the $150 racer registration fee under the Numbers for Nonprofits program.



“The real purpose of running isn't to win a race; it's to test the limits of the human heart.” 
~Bill Bowerman

Monday, February 18, 2013

Restaurant Night!

Thanks to all of our wonderful staff for making this year's restaurant night such a huge success!


















Mark Your Calendars


Latham has quite a busy month of February.  Here is the latest:

2/13:                      Community Meeting -All components of Latham meet to celebrate Latham’s brightest stars over the past month!

2/13:                      Valentine’s Day Restaurant Night -Fish will be on the menu in recognition of Ash Wednesday.

2/15:                       The Garden Ladies- Just in time to make Valentine’s Day gifts.

2/15:                      Nostalgia Night- Come see Latham’s finest celebrate their unique talents!

2/18-22:                 February Vacation- A variety of activities will be offered to the students throughout the week.

2/19-20:                 Staff Circle of Courage training- Staff will receive training in the core values that drive Latham; Independence, Mastery, Generosity and Belonging.

2/25:                      Latham School Assembly- See the Student Council strut their stuff and important school updates.

Hope to see you there!





Gerald J. Pouliot,
Assistant Principal

Saturday, February 16, 2013

Latest News: Survey


Latham Centers, Prader-Willi Syndrome Association of New England and Advocates Inc. are planning our fall conference on Cape Cod. We would love to hear from you about which topics are important to you, what ages you are most interested in hearing about and if you would be interested in attending. Please consider taking a few minutes to fill out this survey so we can be sure that your area of interest in included. The deadline for the survey is 2/23/13. 

Click HERE to take survey.

Thanks so much! I can’t wait for what should be a great conference!!!

-Patrice

TIP of the WEEK: Sensory Integration


Earlier this week I attended a training on sensory integration. I have attended many trainings on this topic in the past but each time, I come away with something new, and this time was no different. As I listened to the trainer talk about different kids with different needs, why some kids struggle with crowds, noises or tight clothing it struck me that we all struggle with sensory processing difficulties on all different levels. I do not like certain materials of clothing or textures of food and my mood would directly reflect that preference if I was made to wear or eat something that I did not like the feel of. We put kids in classrooms with loud noises or too bright lights and look to the child to correct their behavior when it is unwanted or otherwise negative.  The truth is that some kids feel itchy in any type of clothing and their fidgeting is not always a result of ADHD, non-compliance or attention seeking as we often label them. They have a sensory processing difficulty and we should look to reduce their discomfort instead of medicating or using behavioral interventions to reduce what we see as disruptive behavior. Of course in some cases kids do require medications or other interventions to reduce unwanted behaviors, but we need to look to the basics first:
  • Are they comfortable? 
  • Can they see? 
  • Can they hear over the background noises? 
  • Are they too cold or too hot? 
  • Do they feel physically grounded to the floor or are they dizzy or off balance? 
Our kids are so good at compensating for what they struggle with and it is how they can often go so long with real issues before anyone picks up on it. A registered occupational therapist can tell you if your child has needs in this area. All too often our kids are denied ongoing OT because, again, they can often appear as though they would not benefit from this. Push for it. Demand it. Our kids do not always develop their senses in a typical way as a result of poor muscle tone and dysfunction of the endocrine system and it isn’t until later in life, often once they reach school age, that we see the struggles that they are having. Early work with a registered OT can save a lot of time in meetings later on with teachers and administrators telling you that your child can’t seem to sit still or can’t focus, won’t follow directions or is disrupting the group. Before you let anyone tell you that your child needs medication or a special plan in place, especially if that plan involves restrictions, ask yourself- is he comfortable? Is she grounded in space (not dizzy or feeling like she’s tipping)? Does he feel constricted or not constricted enough? Does she always seem to bump into things, is she “clumsy” or tripping more than she should? Does he cover his ears even at the slightest noise? Is she only happy when she’s moving or is she fearful of any movements other than walking? These are all signs of sensory processing disorder and the great news is that there is a lot that you can do about it.

Your child does not have to live their lives being uncomfortable or feeling out of control. Sensory integration as a part of daily life will make an enormous improvement to your child’s quality of life. Always consult a registered OT before incorporating sensory integration but do it soon and do it often because I have seen firsthand the transformation that takes place once we target and treat the problematic areas. We’d love to hear your stories of how sensory integration has improved your child’s life!

Submitted by:
Patrice Carroll

Tuesday, February 12, 2013

The “To Do List”


My head hurts. It isn’t because I’m sick. It’s my “to do” list. How in the world do I have so many partially finished tasks? If I am honest, it is probably more truthful to say partially started. I have really good intentions but lately I have gotten off track. I think of it like reading a book. Normally I’m a cover to cover reader. Finish one, pick up another. Right now I have about 12 books going with the first chapter read. Not the most cohesive way to understand the story--I’m mixing everything up.
Finishing this post is my first complete job of the day: start to finish. One focus, one task complete. It feels good to have this done. Now, on to the next one…..one down, eleven to go!

Submitted by:
Chris Gallant

Friday, February 8, 2013

TIP of the WEEK: The Importance of Training


We spent this past week with a visit from Dr. Jan Forster and Dr. Linda Gourash from the Pittsburg Partnership. Both Dr. Forster and Dr. Gourash are ongoing consultants for Latham Centers and their frequent visits are jam packed with direct individual consultations, site visits and staff training. Even the most seasoned staff members need to have the opportunity to learn, share their own knowledge and get updated on the most current best practices.

Training sets a standard for core competencies, allows a person to develop personally and professionally and allows an agency to set a level of optimal care standards for safety, health care, behavioral interventions and many other areas. The recent visit from Dr. Forster and Dr. Gourash gave our staff an opportunity to brainstorm and learn from their extensive experience working with children and adults diagnosed with PWS.

Submitted by:
Patrice Carroll

Tuesday, February 5, 2013

Special Education Update from Latham School


It has been an exciting, positive and productive school year at Latham!

In the fall students were introduced to a brand new schedule which they have handled with ease. There is now a lower student-to-staff ratio in many classes such as reading, mathematics, performing arts, and vocational skills which has created a more concentrated one-to-one learning environment in the classroom. The bar was raised for our students and once again they amazed our dedicated staff with their accomplishments.

The Race Point and Bass River class enjoyed time in the community together. Community outings included registering to vote at the Brewster Town Hall, voting for the President at the Brewster Baptist Church, and taking a tour of the Statehouse in Boston. Nauset class continues to work on belonging, unification, and working toward potentially obtaining high school diplomas. Recently, a Latham graduate received his high school diploma which enables him to walk in his district’s graduation ceremony this June. 

Our younger classes have integrated Sensory Rooms into their classrooms where they are able to request use of. Students have also been working on methods to identify challenging emotions and how to best handle these difficult feelings.

The work by both the students and staff on a daily basis is remarkable. The educational team looks forward to working with all of the components of Latham in order make sure that each individual student reaches their maximum potential. I consider myself fortunate to be a part of such an extraordinary community.


Gerald J. Pouliot
Assistant Principal

Friday, February 1, 2013

TIP of the WEEK: Preparing For the Hospital


We never want to think our kids will need to spend any time in the hospital but a little preparation goes a long way with this unique syndrome. If you are fortunate enough to have time to prepare your child ahead of time, do so. Take a trip before his or her admission to see the unit, meet the nurses and get an idea of what a hospital room looks like. Most hospitals that serve children will be happy to accommodate a pre-visit of this sort. Talk to the kitchen staff ahead of time and get a menu and be sure to stay as close to their typical food and calories as usual. Don't set yourself up for the hospital being a place where extra and/or special food is obtained. There is nothing worse than a child faking serious symptoms just to get to the hospital for extra food. If this is a concern, the hospital will allow you to bring your own food in.

Try to arrange for a family member of friend to be with your child if you cannot be. Hospital staff will likely have very limited experience with PWS and issues like sensitivity to anesthesia, high pain tolerance, fabrication of the truth and high anxiety may be overlooked or misinterpreted. Stay as close to your home routine as possible. Favorite games, toys or sensory items can be brought with your child in most cases.

The ultimate goal is getting your child healthy and back home but good communication and pre-planning will make your hospital stay more tolerable for everyone involved.

Submitted by:
Patrice Carroll
Manager of PWS Services