31 for 21: Musical chairs, part 2

Early on, Raphael took well to eating solid food, that is, purees, while strapped into a Tumbleform seat.

As he slowly grew, his occupational therapist said he needed to be held more upright but the Tumbleform we were using didn’t have a full harness to allow that position. So I occupied several nights reading product reviews on the Internet to find a seat that would support Raphael’s trunk and help him fight gravity and the backward hyperextension that’s unfortunately so popular with babies who have Down syndrome. The high chair also needed to be small enough to fit our little eat-in-kitchen and portable enough to take with us on those rare occasions when we visited grandma.

Raphael as a toddlerm happy in his Space Saver high chairThe Fisher-Price Space Saver high chair was just right. It reclines, has a five-point harness (very important!) and a removable tray, straps onto a kitchen chair, and has a high, curved seat back that pockets baby so his shoulders are held forward correctly and his back upright.

I wasn’t about to pay $60 for a new one, so I searched until – hallelujah! – I found one on Craigslist for $25.

I dragged two should-be-napping kids, one of which was attached to an oxygen tank, to the next town to pick up my Craigslist find. Now, I need to point out that I am a clean freak at heart, albeit an extremely relaxed one now that I have a husband and two children. Who can keep up? When I found the high chair, I didn’t want to touch it. I cannot imagine how more encrusted food could possibly be more entrenched on that chair nor how the seller could have actually let his child eat in it. And get this: The dad selling the chair said he had cleaned it. Unfathomable.

Rather than walk away and take a Babies R Us detour on the way home, I tried to haggle (I had spent all that time locating the chair and had driven all that way) but the dad wouldn’t budge.

Eventually, I forked over the cash, grabbed the seat without touching it as much as possible, and took it home to bomb it with Clorox and a scrub brush. The seat pad said not to machine wash, but I heeded no warning and ran it through the washer several times.

Raphael in his high chair propped with a towel between his knees

Notice the kitchen towel stuffed between Raphael's legs to keep him from slipping forward when he was smaller.

That Space Saver high chair has worked well for us.

When Raphael was smaller and less coordinated, we put a kitchen towel between the horn that the child straddles and the baby to keep him from sliding forward. (Babies are messy: I laundered a lot of dish towels.)

The only drawback has been that the arm rest crevices are a magnet for irretrievable crumbs, but I’d say the high chair is in pristine shape compared to the ones my child has since sat in at various friends’ houses. (I suppose my standards are not as relaxed as I think they are.)

The shoulder straps keep Raphael in place long enough, and the seat back keeps him positioned well enough so that we can get enough calories into him, and he can focus on the task at hand.

Without proper support, a child with low muscle tone, like Raphael, has to work too hard to hold his body up and isn’t left with enough energy for eating.

Raphael leaning on a restaurant table, not well supported for eating

Raphael leans on a restaurant table. Happy, messy, but not really full.

I’ve noticed that when we are out of the house and a harnessed, rounded, high-back seat is unavailable (always), Raphael eats considerably less, which is a big concern when my child, at nearly two and a half, hasn’t gained more than 17 pounds since birth.

A sitting posture problem may be imperceptible to most, but since Raphael has paid multiple visits to nutritionists, and a county health worker routinely stops by to track his weight, and we’ve logged every sip and spoonful he’s consumed for various time periods, believe me, using the right high chair – which is just one of many feeding strategies employed – is a source of major worry. (Which is why, by the way, I get touchy when well-meaners make light of the situation and comment on how well they think Raphael is eating while I am sitting by fretfully counting too few ounces taken in.)

Now that Raphael is gaining in gross motor strength and oral motor coordination, it seems the Space Saver is making him hunchy: his shoulders are being rounded too forward from the sides. At almost 28-months-old, 23 pounds, and actually sort of tall for a kid with Down syndrome, he is ready for another seating adjustment.

Please come back to read Part 3 about the adapatations we are now making to support Raphael’s body so he can better learn to eat.

About elizamom

Colorado mother of two small boys. One happens to have Down syndrome.
This entry was posted in Baby Gear, Down syndrome, Parenting Special Needs and tagged , , , , , , . Bookmark the permalink.

One Response to 31 for 21: Musical chairs, part 2

  1. Pingback: 31 for 21: Musical chairs, part 3 | The Upside

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