Friday, September 4, 2009

Help with Feeding, please!

(here's our sweet little guy playing in his high chair - we hope he'll be eating there soon!)

This post is probably more geared toward those of you who have children with DS or are well versed in feeding therapies...


Since going to the National DS Convention, I feel really lost about how to start solids. I've been instructed by our EI PT that we should wait a little longer until Nate has more upper trunk stability, but then what? I've given Nate tastes of things and have experimented a bit with a spoon, but I just don't see how I'm supposed to do this.

So, you'll probably say that I should go to a therapist for's where I get totally the convention I went to an all day workshop on oral motor therapy with the woman who invented Talk Tools, Sara Rosenfeld-Johnson. She very clearly expressed that many therapists are not treating children with DS appropriately. Either they are doing the same therapy with all OR they just have low expectations (one friend shared that her therapist said that it's "normal for children with DS to not really chew and that was just how it was". What??? Hello, choking hazard!).

So now I don't know who to go to. How do you know that the therapist you are working with is doing the right thing (ie/ not pushing the tongue in, etc)....

On the few occasions that I have actually tried to spoon feed Nate, I put the food on the middle of the tongue and just sort of held the spoon there. All Nate did was look at me funny and stick his tongue as far out as it could go....what am I supposed to do with this???

If you have any ideas for me, I would really appreciate it!

Thanks so much,


  1. Danielle-

    I would go ahead and try to meet up with a therapist. Maybe they could at least give you a few ideas to start with and if that doesn't seem to help Nate any, then maybe some more research will be needed.

    I think Nate probably just needs to become more familiar with these new flavors and textures. I'm thinking the more you offer, the more he might try and move that stuff around and figure out exactly what to do with it.

    I know it seems like a lost cause right now, but I really think persistence is key.

  2. Just because one therapist, even a nationally recognized one, says that everyone else is doing it wrong, doesn't mean that they are. There are different approaches and philosophies, and they aren't absolutely "wrong" or "right". The trick in all of this (therapies, education, even medical) is to filter the information and figure out what works for YOUR child.

    That said, go ahead and meet with a therapist about your concerns. Try their methods for a few weeks and if you see improvement, keep it up, and if not, do something different. It really does tend to be hit and miss with this stuff!

  3. How persistant were you when you attempted to feed him? I only ask because the first few bites I gave Eon just spilled out of his mouth and dribbled down his chin. He didn't even spit it out; there was just no response from him. But, I remembered to gently press down on his tongue and that seemed to trigger something. He started moving his mouth and then sucking food off the spoon. Now he's doing a chomping movement and hasn't met a jar of baby food that he doesn't like. :)

    I say just keep trying and consult with a therapist when you have specific questions.

  4. You might want to try 5-10 minutes of oral motor therapy prior to trying to feed Nate. This will wake up his mouth and make him more aware of the food. Also you could get some Maroon spoons ( They work quite well for helping to position the food and tongue for good feeding results. Patience, all babies start off really messy!

  5. I thought that was how all babies acted when you first tried to give them solid foods! Other moms (of babies without Down syndrome) I've talked to all told me to expect that reaction- their babies just made a face and let the food dribble out.
    You could try re-framing how you look at this and not worry about how Nate's Down syndrome might affect his eating, at least at first. What would you do if this happened and he didn't have DS? You probably wouldn't think he needed therapy. We just started trying solids with Anthony over the weekend. His pediatrician said to start with rice cereal for a couple of weeks, and then introduce one fruit or vegetable at a time. This is the same plan other moms I know are doing. Our doc didn't give any specific advice or have concerns related to the Down syndrome (and Anthony had a g-tube up until 2 months ago). We do have an appointment in 2 weeks with the speech therapy/feeding team. I expect they will give us some advice. But one thing I have found is that the therapists tend to see problems they expect to find ("oh he has DS so he will do such and such...").
    Maybe I'm being naive and sorry if this seems like useless advice, but I think our kids will rise to our expectations!

  6. We didn't wait for LC to have upper trunk stability...we initially fed her in her car seat, so she could recline a bit and not have to focus on staying upright. All she had to focus on were her oral muscles, etc.

    We did oral stimulation before feeding...the NUK brush is a favorite, but even brushing the inside and outside of her cheeks with a child sized toothbrush can be stimulating. Then, just put your finger on the center of his tongue and pump down on it, so that he instinctively resists and lifts on his tongue.

    We used a fair amount of thickener, since LC doesn't do oral fluids and would aspirate on a thinner food. I put the spoon in her mouth and, again, pushed down on the spoon so her tongue would instinctively respond a bit.

    Another oral stimulator is to serve any solid foods straight from the fridge. The chill will trigger those areas of the mouth that might be slower to respond otherwise.

    He looks like a handsome devil in that high chair. I'm sure he'll be chomping down in NO time.

  7. I would just request a ST that has been trained in oral motor therapy or call Sara's company and see if she recommends someone in the Portland area. I'm sure there are some therapists there trained by her. I do think she is on to something with our kids and she has a great parent kit that I would recommend getting. I would definitely do some oral motor stimulation before feeding him, then feed him with the maroon spoons and go side to side with the feeding. This helps the food get to the cheeks so that it isn't just pushed out by his tongue. Good luck, it will all work out!!!