Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Saturday, November 16, 2013


Nicholas has an imaginary son.

His name is Mok.

Nick's job is to parent Mok. He takes him to school, reads him stories and educates him on the do's and don'ts of good behavior.

Interestingly enough, Mok also serves as the fall guy any time something has gone terribly wrong.

"Nicholas," I asked one night, "How on earth did the living room get so messy?"

"Oh Mom, that was Mok, he is having a tough day."

Mok is also well known at school.

Nick's teacher, Mrs. T has written many a note to me at home describing many of Mok's antics and Nick's attempts to keep his son on the straight and narrow.

Other parents may be worried if their 11-year-old child had an imaginary friend. But to me, it is a refreshing sign of Nick's continuing development. Since his emotional maturity is delayed he is exhibiting "typical" behavior for a child who is younger.

Mok's  crafty presence and his steadfast devotion to my sensitive son has been a helpful tool from a behavioral perspective. He allows me to talk to Nicholas about his behavior without him feeling personally criticized. There are far fewer Nicholas outbursts and more understanding when the brave Mok valiantly comes to Nick's rescue.

Yes we all have a warm spot in our hearts for Mok.

Last night it appears that Mok went on a reconnaissance mission.

I found the bathroom step stool next to the refrigerator. It appears that the crafty sprite tried to locate the key to the refrigerator. Thankfully, we have hidden it in a more inconspicuous location.

But when I asked Nicholas about the secretive attempt to locate the key to the fridge, he was quick to throw his poor imaginary son, right under the bus.

"Mok did it Mom, he was hungry."

Once again I am thankful to Mok for validating our decision to lock the fridge and enabling Nicholas to escape any unnecessary punishment. Children with PWS are physically unable to control their appetites and I refuse to punish a child for a behavior that is not within his ability to control.

Last week after my presentation to the sixth graders on PWS, Nick informed me that Mok was suffering from a serious disability. He told me his son had Mad Snail's Disease. This, he said occurred after Mok had been bitten by a snail.

Yes, the delightful Mok sure gives me a good laugh and a very good idea of the inner workings of my young son's interesting mind.