Dan and I are preparing for Jayden's first IEP meeting. It is nothing short of exhausting. I hope we have a team of positive, proactive educators...

I was reflecting today about how much of my life has prepared me for PWS.... here is my laundry list...

In college I was interested in genetics, nutrition and physical therapy so I took introductory courses in all of these subjects. PWS is a genetic syndrome which requires you to be VERY nutritionally conscious and daily physical exercise and therapy is crucial.

Even though I received my BS in business administration, I became a credentialed teacher and taught for over 5 years. Having gone through the credentialing process I am familiar with IEP's and how schools function. I also know what good teaching looks like and the challenges of managing a classroom. I believe this experience provides me with empathy for the requests and demands we put upon our teachers but also provides me with a "no-bullshit" mentality as I know what is reasonable to expect from an educator.

As I mentioned, Dan and I have been discussing our IEP and these are the food rules we plan to give to the school and have documented in the IEP. I would love to hear what your comments.

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Food is stress and stress causes anxiety leading to behavior problems and inability to learn. Food security must be in place at ALL times. Successful behavior management of PWS requires uncertainty about food be eliminated. Meals and snacks must be given in a predictable routine. There may be no opportunities to obtain food outside of the scheduled meals and snacks.


Only food provided from home can be given.

Food cannot be used as punishment or reward.

Food cannot be withheld - food must be given during the scheduled snack time.

Food cannot be used as positive reinforcement - food can only be given during the scheduled snack time.

No outside food can be distributed during the school day (this includes special treats for birthday parties.) If outside food MUST be distributed to the class, food must be packaged in a non-see through bag and distributed as students are leaving. Jayden is not to be handed the bag directly - it must be given to his parent/grandparents upon pickup.

Access to food must be eliminated:

Garbage needs to be removed from the room after snacks and meals

Food must swept off the floor, chairs and tables after snack time.

Student snacks/meals must be kept out of reach and out of sight.

Edible food (that will be eaten after the activity) cannot be used in the curriculum. Uncooked beans, rice and macaroni are acceptable for art projects but a one-on-one aid needs to supervise to ensure it is not consumed.

Jayden must be supervised during snack times to make sure he does not take food from other students. A one-on-one aid may be necessary during snack time in the future.

Jayden will look for opportunities to eat non-edible items. Please closely monitor his use of play dough, glue, crayons, shaving cream, lotions etc

ripping off the bandaid

Jayden turns three in February so we are beginning the IEP process and working with regional center to determine eligibility. Today, Jayden had a developmental assessment. The assessor thought he did really well....I thought Jayden performed as expected. The results (if I remember correctly):

Cognitive Development is at 26 (or was it 28....) months
Receptive Language 24 months
Expressive Language 17 months

Although they can't measure IQ at this age, he was given a score of 80. I was told 85 is the low end of normal or average. This puts Jayden just a bit lower than normal but will not qualify him for regional center based on a diagnosis of retardation.

Even though I expected these results, its still to easy to hear. Its like ripping off the bandaid again. The diagnosis and its challenges are in black and white in front of me.

Tomorrow we return to speech. We purchased proloquo2go for the iPad and have begun introducing it to Jayden. I look forward to our speech session tomorrow and hope the therapist will share some ideas for implementing the program.