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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Out of Juice

I will occasionally use this blog to share some of the behaviors that we CHARGE parents face on a day-to-day basis with our kids. Some of the other readers of this blog who deal with other syndromes and disorders will concur that the obsessive compulsive behaviors can be the most challenging. Like many situations, they are challenging and frustrating first, then we are able to find humor in them later. If we didn’t somehow find the humor, it would drive us all to the edge of sanity!

One of the many alterations we have made in our home to stay one step ahead of the little genius figuring out various locks and means to keep him out of areas that are a danger to him, we have had to screw every last register vent and return air grill with numerous screws to keep puzzle pieces and any thing that will fit out. Also added to the backs of all vents is 1/4″ hardware cloth, this added after he found out that many things could still fit through the slats. Matthew’s obsessiveness with stashing keeps him ever looking for new places to stash things. He seems to keep his prospective cache’s to those that provide a small slat of slot he can slip something in to.

Items pulled from register vents in our home:

  • puzzle pieces
  • pieces of puzzle pieces
  • diapers
  • photos
  • books
  • keys
  • bra
  • socks
  • sweat pants
  • silverware
  • mouse pad

More recent stashing places; the piano, our oven, behind the fridge and the small gap between the bathroom cabinet and the wall. One day while driving Theresa’s van I commented that the speaker sounded funny. It sounded funny due to the half box of Wheat Thins that filled it. He filled that along with the heat/air vent next to him. At least is smelled like fresh bread in her car.

If Matthew were able to share verbally the most frustrating thing he faces in his life I would imagine it would be a dead battery on my cordless drill. Want to see a kids face light up as if it were Christmas morning? Pull the trigger and emit the whirring sound of a cordless drill in earshot of Matthew and you will see “that look”.

Imagine the proud look on my face when Matthew figured out how to use a screwdriver…

We used to keep my cordless drill on the fridge, that is until he opened the oven door, climbed on top of the oven, stepped from the oven to the counter, used the mail sorter as a ladder and climbed on top of the fridge to gain access to his/my beloved drill.

Oh, if you ever need to borrow my drill, we keep it in the microwave…doesn’t everyone?