One of the many unexpected directions families of children with Down syndrome receive is to skip the sippy cup and go straight from bottle to straw.
As an outsider, I always thought the idea of a sippy cup seemed so cute—the name alone is adorable. Sippy cup. It screams “toddler.” But now knowing my daughter and understanding the recurring challenges that low muscle tone presents, I’ve shifted my goals from conformity to an unapologetic sui generis.
The choices we need to make as parents of children with Down syndrome are very often at odds with the preconceived notions we brought with us to the delivery room, and mainstream marketing campaigns often have nothing to do with enhancing the development of our truly special little ones.
For example, when we graduated to bigger bottles, we scrapped the faster flow nipples that came with them and kept Hope on the slow-flow newborn ones that are helping her strengthen the muscles she will one day use for talking. And despite how much more difficult it is to drink from a straw than from a sippy cup, we have been reminded time and again how important it is to keep training her muscles during mealtimes, just as we train her muscles during PT (and all throughout the day, quite frankly).
In our pursuit of straw drinking, we started with the TalkTools Honey Bear, given to us by a wonderful feeding therapist during our monthly group meeting this past summer. She set a goal for all of our children to be drinking from a straw by 13 months of age, which felt eons away at the time.
Following this meeting, I let several weeks pass without even taking the Honey Bear out of its packaging. The task of straw drinking was too daunting, and I felt far under qualified to be the one to attempt this feat. Besides, we were focusing on solids and spoon feeding and maintaining a positive atmosphere in the high chair. I didn’t want to mess this up.
The weeks turned to months, and after Hope comfortably took to her cup, I mustered the courage to place the straw in her mouth. The TalkTools directions instructed me to pull the straw out about an inch, squish Hope’s cheeks to round her lips around the straw, and squeeze the bear to bring the liquid up through the straw.
Although she looked painfully adorable doing this, we were getting nowhere. Our OT intervened, having us instead pull the straw out only about ¼ inch and simply place it on Hope’s tongue and wait. This was our winning strategy! Within just a few days, Hope had her lips wrapped tightly around the straw and was swallowing gulps of water.
We have since been able to apply this skill to sucking purees out of a pouch, a feeding technique I have no intention of relying on, but which is beyond convenient when we are on the go.
Although I’m grateful for the ease of the TalkTools Honey Bear and the success we have experienced using it, its obvious association with honey, a food everyone knows is poisonous to children under 1 year, really makes me wonder. We’ll be moving on from the Honey Bear as a result of the social awkwardness of placing what looks like honey into my baby’s mouth, and I’ll be relieved to not have to explain to strangers, “Thank you for caring,” and “No, this cup never had honey in it.”
Pingback: Benefactor or Victim of an Imperfect System’s Flawed Test? | At Her Own Pace·
Pingback: Social Distancing a Preschooler With Down Syndrome | At Her Own Pace·