How We Maintain Joy for Our Boy — With a Little Help From Pat
How the Elf on the Shelf brings holiday festivity to this Sanfilippo family
For many, January is a month of renewal, a fresh start to a new year. It’s a time to make resolutions and promises to to be better in some aspect of your life. To us, it’s a reminder of, “Oh, crap, we have to take the Christmas decorations down!”
My husband and I are originally from Ohio, and even though we’ve lived in Texas for nearly two decades, we depend on our Christmas decorations to put us in the holiday spirit. We no longer experience the childhood cues of the season, such as freezing Midwestern temperatures and snow flurries. So our Christmas décor usually goes up the day after Thanksgiving and stays up until the celebration of the Epiphany on Jan. 6.
Our cleaning-up process is pretty straight forward — except for one thing: our Elf on a Shelf.
Depending on whom you ask, the Elf on the Shelf phenomenon is either a delightful way to inject more cheer in your children’s holiday season or a manufactured torture device designed to ruin parents’ lives during what can be one of the most stressful parts of the year.
For those who participate, the real work for adults comes from making sure that the elf has moved during the night. Because our elf’s return is a surprise each year, special care must be put into when and where it spends its offseason. We can’t upset the magic!
Pat joins the family
Our elf joined our household in November 2012, not from a desire for more holiday delight or increased parent workload, but as a recommendation from our son Will’s speech therapist and teacher.
Our sweet boy was still over two years away from being diagnosed with Sanfilippo syndrome, but he was already showing a bit of a gap in development. At that point, our mindset was that “he’s a summer boy birthday, he’ll catch up” or “he’s still hitting milestones, it just takes him a bit longer.” So when we were told that the elf would be a fun way for our toddler to practice his language skills, we were all in.
Will was overjoyed with his elf! He immediately christened it “Pat,” and he would look for it each morning, find it in its new, hard-to-reach place (there’s a rule about not touching the elf or else it loses its Christmas magic, so Pat always had to be in high places for our impulse-control-lacking son!), and correctly use prepositions and location words to talk about it.
Will would then go to school and tell his teacher. It was a perfect way to motivate him to practice those language skills, and we were certain we were doing everything possible to “catch him up.”
Until we learned that he’d never catch up.
Sanfilippo syndrome is devastating for a hundred different reasons, and each one is a separate dagger to the heart. Learning that Sanfilippo progression would eventually rob our little boy of his sweet voice was one of the hardest things to comprehend.
For a child with Sanfilippo, Will was so verbal. Yes, his language skills never caught up to his neurotypical peers, but he did reach a level where he could speak seven-word sentences. He could make his choices known. He could tell us how he felt. And then, slowly, day by day and year by year, those words faded.
Will is now nonverbal. I can’t tell you how hard it is to type that sentence. We’ve always known it was coming, and we know that verbal ability does not indicate his importance as a person, but to lose that sweet voice, to lose our conversations and jokes — it’s a loss that deserves the respect of being grieved.
We still have Pat. Our elf continues to bring Will (and Little Sister!) joy even if he can’t tell us where he found Pat anymore. But we still see the magic in his eyes every November when the Christmas decorations go up and Pat makes the first appearance of the season. Pat will keep coming to visit us each year, if for no other reason than to remind us that joy is joy, regardless of how you convey it.
Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.