Good Eats

Perhaps some (a lot!) of you are growing weary of my posts about Finn's eating. Indulge me anyway!

Feeding has been one of the two major, stress-inducing issues we've had with Finn (the second being speech/communication, which really, compared to feeding, has been a far smaller concern thus far). Feeding has been an issue for a very, very long time. Long before he was even a year old, I was concerned and stressed out over his apparent inability to handle anything beyond purees (and even getting him on purees in the first place was an ordeal). This is why whenever he makes strides in the area of feeding, I am inclined to shout it from the rooftops!

Feeding seems to be following a typical pattern with Finn with regard to mastering any new skill: just when I finally feel hopeless, he suddenly takes a step forward, as if to say, "Geez, Mommy, have some patience, will ya? I'll get there when I'm ready."

So over the last several weeks, Finn has made great strides with foods in the way of showing a definite interest in foods other than his usual fare of jarred baby food, pestering me for food when we sit down as a family for dinner, allowing me to feed him a variety of things from my plate with a fork, and signing "more." He has become very proficient at self-feeding things like pretzels, crackers, Cheerios, and Veggie Straws. It's now time to put the two together: encouraging him to self-feed regular table food. Behold:



This was a HUGE first: he sat down with the family and had for his dinner exactly what we all had for dinner (penne pasta with marinara and meatballs, cut up into bite-size pieces), and he fed himself. He did put a little too much in his mouth at one point, which caused him to gag and spit it out, but he got right back on the horse, so to speak. And he finished that entire bowl of pasta and meatballs.


Way to go, big boy!

Another Connection

I've been wanting to get my girls into swim lessons. My dear friend, Jen, put me in touch with a local college girl who gives private swim lessons to kids over the summer. So I called her last night and signed all three of my girls up for three weeks of daily swim lessons for this summer.

That in itself is exciting. To add to the thrill, though, is this: this swim teacher? She's one of six kids in her family, and . . . (drumroll . . .) she has an adult brother who just happens to have Down syndrome. Jen had told me that when she gave me her contact info, so when I talked to the swim teacher last night, after we covered the business of swim lessons, I took a deep breath, and said, "Can I ask you about your brother?" I told her that I have a little boy who has Down syndrome. She was very open with me and told me all about her brother. She said that he's almost 25, and that when he was born, the nurses told her mom that she may as well leave him at the hospital and give him up for adoption, because he'd never walk or talk or do anything and would just be a burden. Man, oh man. She said thank goodness her mom thought differently, because here he is 25 years later, graduated from high school, with a part-time job doing landscaping, healthy and happy. I asked her what it was like for her growing up with a sibling like him (she is younger than he is). Know what she said? "I've never known any different. When I was little, I thought every family had a kid like him, and when I got older and realized that not every family does, I thought the families that don't have a kid like him were strange." She said that some day when she gets married, she would like to adopt a child with Ds.

It was just really, really neat to talk to her.

***

In other news, during the feeding portion of OT yesterday, Emily got Finn to eat TWO entire cheese puffs. She thought cheese puffs would be good because they dissolve fairly easily. Okay, it's junk food, but seriously, folks, I'm up for anything at this point. I'd be thrilled to see him eat candy and pizza. Anyway, it was a sloooooowwwwww process, feeding him those cheese puffs - it took a good 20 minutes for him to eat the two - but he took bites off of them, and he chewed (!!), and swallowed, with nary a gag or spitting out.

Progress, people. Progress.

Speech Therapy and Feeding Issues

A lot of people have asked me why, at 20 months old, Finn doesn't qualify for speech therapy.

I know, it's crazy, huh?

It seems like pretty much everywhere else in the country (from what I've gathered reading other blogs), babies with Ds typically receive ST from birth, addressing oral-motor issues and development before speech begins to emerge. This make complete sense; a SLP is trained and educated to address oral-motor issues and development which, it would seem indisputable, impact both feeding and speech development.

Here in California, though - or at least in my part of California (as I understand it, EI varies widely even from county to county - why, oh, why isn't there a universal standard?), feeding issues are addressed by occupational therapy. And Finn's OT actually is working with us to address Finn's feeding issues (he is still on purees only; he doesn't seem to know how to chew; he has pretty serious texture aversions and a highly active gag reflex). She's good, and very patient, and seems to have all kinds of tricks up her sleeve. However, it's not really her area of expertise. She's a trained OT, originally from Chicago, where feeding issues are addressed by SLPs. It was only when she moved to California a handful of years ago that she began addressing feeding issues, because that's one of the things OTs here are expected to address.

What I was told by our service coordinator a long time ago was that Finn wouldn't even be evaluated for ST until he was 18 months old. So when we had his last IFSP meeting and eval last month when he was 19 months, he was deemed not ready for ST because he's apparently "not cognitively ready to benefit" from ST. Despite the fact that all over the IFSP paperwork that came out of that meeting, it says, "Mom's main concerns are speech and feeding."

Even Emily, our OT, wants to see him receive ST . . . now. And if I put up a big fight, I might be able to get it for him. Maybe. But part of my problem currently, too, is that there are no SLPs available to do in-home therapy right now in my area, and with the chaotic and very full schedule I already have with all of the kids, it's not feasible for me to travel across town for center-based therapy. When my other kids are out of school this summer and our schedule opens up, it might be more feasible, although I'd really rather receive in-home therapy. But anyway, I do plan on going after ST for Finn more aggressively this summer.

Oral Motor Myths of Down Syndrome

There is a really good article here (scroll down to The Oral Motor Myths of Down Syndrome; it's a PDF file, so I can't link directly to it here). It explains in excellent and logical detail the progression of events that likely leads to the tongue protrusion typically seen in Down syndrome, as well as the effects of this on speech development. In a nutshell, it's apparently a circular process: although all babies, including those with Ds, are born nose-breathers, due to low muscle tone, babies with Ds typically have a weak suck at birth. This leads to predictable feeding patterns, which results in fluid buildup in the middle ear, which results in chronic congestion and often respiratory illness, which leads to mouth-breathing and the relaxed and protruding tongue typically seen with Ds, which results in a high, narrow palate, which results in both feeding and speech problems. According to the article, much of this can be prevented by vigilant feeding practices from birth.

The article talks mostly about bottle feeding, but does also touch on breast feeding, and how positioning a baby correctly while feeding, either by bottle or breast, can prevent the fluid buildup in the middle ear which leads to all these other issues.

Except for a short time while he was in the NICU, Finn has been exclusively breast fed. I've always operated under the belief, or at least hope, that this was helping him to develop the oral-facial muscles necessary to facilitate speech development. However, at 20+ months old, and having been breast fed his whole life thus far, although he babbles plenty, he has no discernible words. This article made me look back and examine the progression of events for Finn:

• Due to major intestinal surgery at birth, he was not allowed to take any nutrition by mouth until he was more than a week old.
• Because of this, we had great difficulty establishing breast feeding (low muscle tone was probably a factor as well, although Finn has always had relatively good tone).
• Because of this, he was bottle-fed expressed breast milk for a while; because of his weak suck (due to possible low tone and certainly trauma from the major surgery he underwent, as well as oral aversions from being intubated), he was given a fast-flow nipple, which likely contributed to fluid buildup in the middle ear.
• Although we were able to get him off bottles and exclusively nursing in a relatively short time, we faced a lot of difficulty in this endeavor, and therefore probably did not use optimal positioning for feeding, thus also contributing to fluid build-up in the middle ear.
• Finn definitely became chronically congested; I remember very well the constant snorting sound he would make. He also suffered from chronic upper respiratory infections for many months during his first year.
• The congestion seemed to resolve almost immediately when he had tubes placed in his ears at 11 months old. However, by this time he was already a chronic mouth-breather and even now has the relaxed, protruding tongue, and the high, narrow palate (which I confirmed this morning by feeling for myself).

So. In a way, I am fascinated by all of this, and glad that we can clearly see what happened. But I also feel sad, because what's done is done, and how to undo it now? It makes me sad that this could have been prevented, at least to a degree, but I didn't have any idea at all.

I have no doubt that this is where a SLP comes into play. However, unfortunately, Finn has been deemed not qualified for ST at this time, because he's apparently "not cognitively ready" for it. I'm not at all happy about this, nor do I agree with it, but I also am not in a position to fight it right now. This summer, I will, though.

***

In other news, for the last couple of days, Finn is no longer pulling to stand. Even when I put him in a standing position up against something, he balks. I don't know what to think about this. Trying not to worry too much.