Embrace the Chewy
Those of you who know our kids, know that children with Sanfilippo have an insatiable urge to chew.
It started when Waverly was about 3. All of a sudden, after never mouthing as an infant, she began putting books and toys in her mouth. It was an incredibly frustrating behavior. We thought she had pica, because she would chew the corners off all of her books. When we moved to London and Waverly started preschool with an OT and speech therapist, they began using a yellow chewy tube. To me, it was a huge sign that read "special needs". (This was all pre-Sanfilippo diagnosis.) Eventually, I embraced it. It was easier to redirect her to the tube, versus having her chew on everything she could get her hands on. Since then we have yellow tubes, red tubes, chewelry necklaces, cheweases, etc. We always have one handy for her, whether worn around her neck or clipped to her bib.
We have embraced the chewy.
Now Oliver, on the other hand, has been a mouther from birth. He was in the NICU for his first 2 weeks of life and was introduced to a pacifier there. (Waverly would never take one.) He loves his pacifier still and we have allowed him to use it as needed. For the past few months, he needs something in his mouth constantly. However instead of sucking on the pacifier, he is chewing them. We are going through one per day, because once they are chewed through he doesn't want them anymore. That gets expensive! And it really isn't safe. I worry he is going to choke on a piece of the silicon. We have tried to transition him to a chewy. He thinks they are all for Waverly. He will chew on them for a short time and then deliver them to his big sister. (She is always thrilled. He will place them right in her mouth.)
I spoke with his teachers and speech therapist at school. They thought getting him a chewy that we do not currently have and introducing it to him at school, without Waverly, may help him transition. Yesterday, they pulled out a beautiful BLUE chewy tube (we don't have any blue ones for Wavey). They attached it to him using a beautiful ribbon pacifier clip. And to get him started, they dipped it in maple syrup (yesterday was pancakes for lunch day). He went the entire school day without a pacifier. When they saw him chewing his hands, they would put the tube in his mouth. Today was day 2 of "Plan Oliver & the Blue Chewy" and another successful day. No pacifier for the entire school day. I am truly proud of my little boy.
I am also so incredibly thankful for teachers, IAs, and therapists within the school. They came up with the idea, implemented it and are working to redirect Oliver to a new normal. We are so fortunate to have such incredible people in Waverly & Oliver's lives.