Bright Red T

I am not exactly sure why kids who have Sanfilippo chew objects incessantly.  Doctors assume it is to meet a sensory need, others say it is due to the damage in the brain and still others think it is pleasure seeking.  Whatever the reason, I hate it.  Wavey began putting toys and books in her mouth around age 3.  All of a sudden she reverted back to infancy.  It was one of the first signs that something wasn't quite right.  We tried everything to get her to stop - slapping her hand, taking away the toy, using gross tasting products - nothing seemed to work.

I remember after the kids were diagnosed with their hearing losses, I took Wavey into a local preschool classroom.  The county offered her a place in preschool for early intervention.  There was an adorable little boy with a red rubber T-shaped toy dangling from his shirt.  The teacher told me he could chew on the T throughout the day in order to meet his oral need.

Then months later, Wavey's OT in London presented me with the very same red T.  She thought that Waverly would benefit from using it throughout the day.  My first thought was the boy with the T attached to his top.  I remembered him so clearly.  I remember thinking he "really had" special needs.  I took the T, determined not to use it.  However, Wavey loved it and it allowed her to play with her other toys while chewing on the T tube.

To me, the bright red T signified the onset of Sanfilippo.  It had always been lurking, but once the chewing appeared, we couldn't hide from Sanfilippo any longer.

Yesterday, Oliver's teacher wrote me to say that Oliver has been putting toys and books in his mouth much more often than he used to.  It is an impulse he cannot control.  Matt and I have noticed the change at home, but we didn't want to vocalize it.  Saying it aloud made it real.

It feels a bit like we have reached the pinnacle and now we are beginning the descent into MPS world once again with our little boy.  It is difficult with Oliver, because we know what is coming.  All of the changes we have endured with Waverly are inevitable with him, except we anticipate them.  I hate watching my son taken over by this disease.

The chewy T is now a part of Waverly's life.  It is typically seen in most photos.  We have multiples Ts stashed around the house, car and diaper bags.  I will find the occasional T in the laundry.  She loves her chewy tube.

And now they are going to become a part of Oliver's life.

I guess I need to order more bright red Ts.