Children diagnosed with Prader Willi Syndrome often experience issues related to poor motor planning.
Motor planning difficulties are also known as dyspraxia, a life-long coordination disorder. The word dyspraxia comes from the Latin word "dys" meaning ""difficulty with" and the Greek word "praxis" meaning "acting" or "doing".
Motor planning is the ability to order, plan, sequence and execute a series of intentional motor actions.
Apraxia is the term that is used to describe the complete loss of this ability.
Dyspraxia can effect:
Gross and fine motor skills
The organization of movement (planning what to do and how to do it)
Speech and language
And the ability to carry out activities of daily living
Nicholas experiences motor planning difficulties in all of the above. It presents itself as a kind of slow motion delay. He knows exactly what he wants to say or do....it just takes him a moment to do it., like he is moving in slow motion.
As a parent or caregiver, you must learn to be PATIENT.
As a result, transitioning from one activity to the next is difficult for those diagnosed with PWS.
As a caregiver you must recognize this difficulty and build in some supports to assist your child.
This has been a very difficult concept for me to learn since I like to do everything fast. Patience is not a word I easily embrace.
I am a "get it done" kind of gal. I like to make a list and cross things off. I go, go, go...often in fast motion. Unfortunately, this type of freewheeling lifestyle is not conducive to a person who suffers from motor planning difficulties. As a result, Nicholas becomes easily overwhelmed. Over stimulation will cause him to shut down and eventually tantrum.
So, what's a fast-paced mother to do when she is parenting a slow motion kind of a boy?
For example, Nicholas has difficulty transitioning from playing at home to getting in the car and going to school. Any effort to move him quickly will result in a tantrum and an "I don't want to go to school" mentality.
After many years of struggling with this behavior, I have learned to give Nicholas a ten minute notice. Ten minutes before it is time to go, I will say things like,
"Nicholas why don't you pick out some items that you would like to take to school. How about your Umi Car? Alex would love to see that."
This is his cue that it is almost time to go to school. He knows he has about ten minutes to collect some "transition" items, things like backpacks or candles, physical items he holds in his hands to help him transition without anxiety. For Nicholas, carrying something in his hands gives him a sense of security and purpose. It relieves his anxiety.
Next I will say,
"Here's your coat, let me help you put it on,"
I am careful never to use expressions like,
"You have ten minutes before it is time to go to school."
This is an anxiety inducer and creates a sense of extreme panic in Nicholas.
I have become an expert at repressing my urgency.
For Nicholas, the ten minute rule has alleviated his transition tantrums.
For me, I have learned that slowing down produces less stress.
I have learned that stopping to smell the roses is sometimes an excellent way to get us to school quickly.