TIP of the WEEK: Hoarding

We know that once our kids do something that they find rewarding it is very difficult to get them to stop. Hoarding is one of those behaviors. The best way to handle hoarding behaviors is to stop them before they happen. If you see your child starting to collect certain items try to encourage them to diversify their interests. Our kids are more likely to find ways of releasing anxiety if they have a broad array of activities and less likely to seek stress reduction in the form of hoarding. For many children, hoarding equals safety. The more they have of their desired items, the more secure they feel. You will know if this behavior has become problematic if you see your child compulsively collecting items, stealing to obtain certain items or refusing to part with them.

Like other compulsive behaviors it is often unhelpful to nag or constantly ask for the behavior to stop, but there are some things that you can do.

• Set a standard for cleanliness. Take a picture of their room in a tolerable condition, if the collection goes beyond what you consider acceptable then items need to be discarded or donated. Doing this allow for some collecting but the expectations are clear and predictable as to what you will allow and not allow.

• Put it to good use. I have known individuals to make jobs out of their hoarding tendency. One woman collected coupons and made a job out of clipping and sorting for her neighbors. Another woman had a small business recycling cans and bottles.

• Appeal to their sensitive side. Children will be more willing to part with their hoard if they know that it will be put to good use by people in need. Local libraries will usually accept donations of magazines, local shelters will take clothing, recycling centers will accept newspapers. Doing a good deed for the community or environment could be just the motivation needed to clear out collected items.

Hoarding takes on many forms but is almost always connected to a lack of control over ones life and a need to feel more secure. Look at what areas of your child's life could be lacking in these areas and you will be well on your way to getting a handle on this problematic behavior.


Submitted by:
Patrice Carroll

TIP of the WEEK: Story Telling

One behavior that we sometimes run into with the child or adult is exaggerating or fabricating stories. Sometimes these stories are harmless and seem entertaining, but sometimes the stories can be hurtful, especially if they involve accusing someone of doing something that they did not do. In both cases it is important to look for the meaning within the story.

I once worked with a man who regularly told stories of saving people's lives, and being a hero in near death situations. These stories were so detailed that it was hard to believe that they were not true. Ultimately, what he was telling the people around him was that he desperately needed to feel important, that he had worth and wanted to make a difference in the world. With lots of creative thinking and job coaching we got him a job that allowed him the basic human right of knowing and feeling that he was part of something and that his presence brought joy and meaning to others. Over time the stories he told were replaced with true stories of the great work that he was doing.

If your child is coming home from school or work with stories of peers or teachers/staff being mean to them, listen closely to find the meaning of the story. The story may be of someone yelling at them but the truth may be that there is something in that person's approach that may be bothering your child.

It is not always as simple as saying that fabricating stories is a behavior of people with PWS, it is typically a way of communicating and it is our job to decipher what the meanings of these stories are. It has been my experience that once the meaning is discovered the stories happen less frequently. The danger is in dismissing the stories as "typical behavior" which often leads to more exaggerated stories. It is up to us, the people who care most for these children and adults, to find the truth within the story and help them achieve their goals in a more effective way.

Submitted by:
Patrice Carroll

TIP of the WEEK: Tough Decisions...Should We Consider a Residential Placement?

This can be a heart wrenching and confusing process. No one wants to have to make this decision but when your child is struggling at home or at school to the point where yours and their quality of life is suffering, it may be time to look at this option. No one knows or loves your child as much as you do but there are places that can nurture, teach and support your child to live to their full potential. There are things to consider when looking at a residential placement:

• How experienced are they working with PWS?

• Does the staff receive training to meet the needs of the students?

• Are they active with PWSAUSA?

Talk to parents who already have children there. Are they happy? Have their children made progress?

Will your child have a peer group? Because children with PWS have such unique needs, they are often singled out in school and made to feel different. We see children who were the outcasts in their previous school who are suddenly popular and sought out for friendship after moving in.

Here are some quotes from parents of children who live here:

 " (My son) has friends, lots of friends. In my wildest dreams I never thought he would even have one friend. I was just happy when kids didn't pick on him. Now he has kids that want to be with him, really like him for him. Not because their mothers told them to be nice or to tolerate him".

" After ( my son ) moved I felt guilty, like I failed and had to give him to someone else to raise. Then he came home for his first home visit and I saw the boy I used to know. He wasn't only thinner but he was calmer, happier. It was then I realized that I made the best decision for him and for me."

" ( My daughter ) had taken our family hostage. My other kids were suffering, we walked on egg shells trying not to upset her. Making the decision to place her at Latham was still so hard but now she visits and we're more relaxed because she is. She calls and she sounds happy. She's working on skills to help her relax and it seems to be working because now when she visits my other kids want to spend time with her."

" The first night he was at Latham I slept. I mean really slept, like the whole night! Then I realized that I think it was the first time I'd slept in 16 years."

We know that the decision for residential placement is a difficult one but sometimes it is necessary for the quality of life of you and your family. We are here if you want to discuss options or even if you just want to drop by and visit. We understand that your child is unique and also understand the unique needs of PWS. Don't hesitate to give us a call, we are here for you.

Submitted by:
Patrice Carroll
Manager of PWS Services

TIP of the WEEK: Executive Function Disorder

We see common traits and behaviors in many of our kids with PWS and many of these are caused by an Executive Dysfunction Disorder. Executive processes allow us to create and carry through with goals, to self-monitor and regulate our emotions, to plan, and to inhibit our responses (think before acting). People with PWS have a deficiency in these areas which leads to:

• Poor time management- this will look like avoiding a task and then rushing through at the last minute.

• An inability to form goals because the ability to create steps to achieve those goals is impaired.

• Inflexibility in thinking. If something is true one day then it must be true the next day in order for it to make sense.

• Relying on imitation rather than a thoughtful reaction. It is difficult to understand their environment and therefore people with PWS will often look to others to see how to react. This can be good or bad depending on who the other people are around them.

• Impaired capacity to think before acting.

What can we do about it?

This is where daily schedules and strict routines come into play. We manage their time for them until they can learn how to do it for themselves. We have seen children who had no capacity to manage their own time learn over the course of a few years through daily work on what 5 minutes looks like, what we mean when we say one hour etc.. Children who have been working on creating goals for themselves and what steps they need to take to achieve those goals were once children who could not manage the sequence of dressing themselves. So we do see improvement with practice.

Social stories can help to make children see that they have a choice in every situation and do not need to rely on others to see what their response should be.

A neat, clean and predictable environment. The less clutter in a room the better. It is hard enough for our kids to concentrate and focus as it is and in a busy, loud or cluttered room it is nearly impossible.

Visual schedules for each part of the day, these can be vague in case specific activities need to be changed.

Undesired behaviors are often seen as being stubborn, manipulative or aggressive when in fact they are usually a result of feeling out of control in their environment as a result of the inability to process, manage time and space and inhibit their responses to stress.

Submitted by:

Patrice Carroll

TIP of the WEEK: STRATEGIES FOR THE CLASSROOM

Many students diagnosed with PWS have some cognitive and behavioral difficulties in school. All students have different learning styles, rates, strengths, and areas of need. Some classroom strategies that Latham educators frequently use have proven to be very effective. Parents may want to consider these ideas when developing an Individualized Education Plan:

• Classroom environment: food secure environment; seating to reduce distractions; minimize visual and auditory distractions; provide a quiet space to work without distractions, as needed; provide space for movement or sensory breaks; make sure the environment is tidy and well- organized; provide a visual schedule of the day.

• Curriculum: Modified to meet the student’s individual working ability; tailor lessons to meet each student’s optimal learning style; have stories available in a variety of formats (print, on tape/cd, large print); integrate teaching organizational skills into lessons, for example: color code student work for each subject with a different color marker and provide file folders of those colors for students to file their work into; teach problem solving skills; pair functional academic learning with real-life community experiences to help boost students’ independence.

• Sensory Tools: Sensory Integration theory teaches that the ability of the vestibular system to modulate sensory input has a powerful impact on the development of functional skills. Once students’ sensory-motor preferences and sensory hypersensitivities are determined, teachers can incorporate tools and activities into the class that will help each student remain at a “just right” feeling of arousal. Sensorimotor integration can decrease habitual, repetitive behaviors. 

The specific techniques used will depend on the desired outcome. A child who presents as tired or fatigued for much of the day may benefit from arousal techniques such as sour spray, therabands for hands and feet,  and yellow or orange light products. For a child with tactile difficulties the use of vibration throughout the day may help him or her accept being touched or being in close proximity to others with greater ease.
Lesson Presentation: Use visual references to help students understand lesson information; Provide extra time for processing information; check in regularly with students to ensure they understand the lesson; provide cues and prompts and close adult assistance to help students remain focused and on-task.

Submitted by:
Pam Nolan, M.Ed.

"You don't understand anything until you learn it more than one way." 

~Marvin Minsky