Monday, August 2, 2010

Looking For Some Hope...

First off, just wanted to say thanks for all the love you gave on my last post of Bennett crawling, we love putting things out of reach and watching him go now and we're so proud of him! But it's nice to know you all are proud of him as well, you're so sweet!;)

Okay onto this next topic, if your child has never had a feeding issue, you may want to skip over this post ;0

While I am SUPER happy with all the things Bennett is starting to do, there is one thing that is starting to get to me:

Bennett is now 14 months and still not self-feeding...


Here are some of the things going around in my head:
  • Ainsley had a rough time with feeding so while this is super annoying frustrating, I'm not nearly as stressed as I was with her.

  • But Ainsley did eventually feed herself and I'm pretty sure she was doing it before or at a year old.

  • His pediatrician thinks we should go ahead and get a feeding evaluation.

  • His OT wants to hold off because she is working on it and thinks he will get it.

  • I'm torn because part of me thinks he needs a feeding specialist to evaluate him and make him miraculously feed himself real solids (ha-ha) and the other part of me thinks that I really don't want to add a fourth therapist to Bennett's schedule and maybe he will get it, eventually. And like everything with him: HE'LL DO IT IN HIS OWN TIME!

So Here's what Bennett can do when it comes to feeding:

  • He loves his baby food and we can all see that the boy is not hurting in the weight department:) {I think this is why I'm not super stressed-Ainsley was so tiny so I really thought she would wither away when she wouldn't eat}

  • He loves his bottle and sucks 80z down in no time.

  • He can feed himself with a spoon a couple of times during a feeding session although he prefers me to do it.

  • He will hold his own straw cup and drink from it.

  • He will munch on a graham cracker, bitter biscuit and mesh feeder.

  • He will tolerate some lumps in his baby food like cottage cheese, chicken salad, carrots or whatever else I can sneak in there but he does gag a little and gets mad when he notices a big lump.

  • He will let me put his hands in baby food, pudding, etc. and put it to his mouth-although this is extremely hard for me since I'm a neat freak but I'm doing it so he'll get the concept of touching the food and bringing it to his mouth and to feel the different textures.

I recently took him out of the enormous Graco highchair that was swallowing him up and moved him to the table in a booster seat so that his little feet could be flat on the chair-I read that having their feet supported helps them to self feed-no such luck with that yet.

Here's what he won't do:

  • He won't pick up ANY food that is put in front of him ie: cherrios, puffs, small pieces of food, pieces of pancake-totally turns his nose up at this.

  • He won't really chew any food that I try to put in his mouth and tuck into his cheek. He gets mad and starts signing "all done". Or he chews with a disgusted face and spits most of it out and then signs "all done".

  • He won't even touch food put in front of him like a cupcake-he knows the difference between food and a toy and will happily play with the toy but gets mad at the food-other than a graham cracker, bitter biscuit or mesh feeder and even then he's got to explore it, turn it all around, dangle it in the air, before he munches on it.

Strangely enough his favorite "toy" to play with while waiting for his food is the Nuk brush and chews on it and has no problem with me putting it in and around his mouth.

So, I know of a few of you that have these exact issues but who else is dealing with this and is there hope? Whose been in my shoes and did things get better? Did you do it on your own or seek a therapist? Is this common among kids with Down syndrome? If so, why? Also, I don't think Bennett has reflux anymore, he was on Prevacid for a while and I stopped it because he doesn't really spit up much and tolerates his bottles without screaming or pain. Oh and he's never been on a feeding tube or had a g-tube so I feel like he doesn't have an excuse as to why he's having these issues! And he has like 8 teeth- 4 of them being molars!! He has the tools to chew but won't!!

Looking for some hope here and trying hard not to seek out another therapist!!!


  1. Hi there, I'm not sure if I've commented on any of your posts before, but I found your blog through babycenter just before you had Bennett and I was pregnant with my daughter at the same time. My child does not have D.S., but I am a Speech-Language Pathologist and if you care to hear it, this is what I think. It can NEVER NEVER NEVER hurt to get your child evaluated by a specialist...because then and there you KNOW what you're up against. Until that point you're wondering/guessing/stressing...but that therapist, whether that day or soon through an evaluation report, will be able to tell you if it's something that needs to be addressed through therapy or if he'll progress without it. I hope this makes sense. You need to do what your gut is telling you because you're his momma. :) Thanks for listening...I LOVE your blog and your boy is adorable.


  2. Adrienne, I was just curious what his tongue is doing. Can his tongue move food side to side to get to his molars? Because Lucas could not do this for a long time. We spent months giving him hard chewables so his tongue could get this movement. We mainly used Slim Jims, Lucas loved the big flavor and he would chew on them for at least 30 minutes at a feeding. You can dip them in yogurt and purees too and he can practice holding it himself and dipping. Once Lucas got that lateral movement in his tongue we moved to veggie straws. At first his sucked on them, then he started using his jaws more. We have seen amazing improvement on self feeding since he mastered this skill. We had two feeding sessions with our OT, who is amazing, and it made a huge difference! Now Lucas can eat anything, self feeds very well except with a spoon, we are still working on that. I think Bennett already has some great skills and he'll get this one too!

  3. Adrienne, I wouldn't be surprised that Bennett is experiencing teething pain, or the pressure of teeth coming in. Because he is apt to use his Nuk brush, I sense this is a big part of his reluctance to have texture in his mouth. I hesitate to think he is texture-avoidant because he does enjoy the Nuk, if you know what I mean. Putting him in a new chair where he has foot support is key and eventually you'll see an improvement, IMO.

    Terry & I pureed Gabe's food until he was about two and half, maybe longer but definitely not pass three years old, with a handheld blender. When I look back at that time in our lives, I believe that teething took more of a process for Gabe, reducing his tolerance for texture. But Gabe's constant spit up was awful and he didn't seem to have the same strength and ability to swallow like typical kids. He gagged a lot. I think he picked up on my anxiety more often than not...

    We introduced soft foods such as cooked veggies and noodles first opposed to crunchier textures -- even putting it all on his tray of his feeding chair so he could handle it with his hands to pick up more sensory information.

    You mentioned that Bennett won't pick up finger foods. I wonder if it would be helpful if you used colored Cheerios (AKA Fruitloops?). We did A LOT of cheering for Gabe and he seemed more motivated. Cooked large noodles might be a good incentive, too?

    Sorry for being long winded, but I wanted to reassure you that Bennett will get it. It is frustrating. I assumed that something like feeding/eating (which should be so instinctive!) may seem like one of the hardest things for our kids to do. But now that Gabe is older, I can see how he needed to process such an intricate skill. There is so much going on: taste, smell, touch, and then the whole co-ordination of food to mouth, and then chewing and swallowing. He'll get there in no time! *hugs*

  4. I finally got Jack to eat with his fingers using sweet potato fries and ketchup. He loves the flavor of ketchup and sweet potato fries are easy to grasp and they are very mushy. Have you tried soups with him? What about sherbert or smoothies...does he like those?

    We literally tried everything with Jack. I kept hand of hand prompting him to pick up foods. The chewing came first and the picking up much later. He now picks of larger things like mandarin oranges but still has trouble with small items like cheerios.

    A specialist might be able to couldn't hurt. good luck.
    Oh - and how many teeth does he have? If he has very little, that could be part of it.

  5. wow, the other comments are great! i've enjoyed reading them! :)

    my only advice is the hardest and most frustrating one--patience, patience, patience! while ben loved food of any kind, he did not start self-feeding for quite a while. i personally think it has more to do with OT than anything else. picking up small things like cheerios or puffs is really so hard for kids with low muscle tone. it takes a much longer time than typical kids ( in my experience anyway). i would focus more on getting the lumps in there and letting bennett learn to move the food around as he chews it. again, this is his tongue and mouth learning what to do and getting stronger and stronger. even though ben is now 3, we sometimes have to start feeding him and then give him the spoon or fork. he understands that it's work to feed himself! but most times he's mr. big boy on the loose with a fork and say, sticky waffles!

    one of the hardest things with this whole ds thing is the waiting. but really, bennett will do it--like you said--in his own time.

    having said that, maybe it will put your mind at ease if you go ahead and have the other evaluation done. at least that way you know one way or the other, will be a little more educated, and can make a better decision for the both of you!

  6. First, that's awesome that he hold his own straw cup! I'll give you some background to my Jack who will be 2 in October. Maybe that will help you not feel so bad. I spoon/fork feed him everything. He occasionally will hold the utensil, but I do hand over hand because he can't do this on his own yet. I too am a neat freak and I know I am holding Jack back. Until my second son is eating in a high chair, I will continue to feed him myself. That's just my own personal choice, since that time is only 3 months away. Jack does self feed blueberries because he LOVES them, but after awhile, they get thrown to the dog. Jack does chew his food, but I sit there and tell him to chew and mimic the action myself. All the issues you listed don't seem too off the wall, except for the chewing part. Jack still gags, probably a few times a week. A feeding evaluation certainly wouldn't hurt. I am sure they can help you with getting him used to chunkier solid foods. Jack's Speech Therapist has always helped us from day one, with food issues as well. Bennett will get it at some point.

  7. I soooo feel your pain. Mine is 5 and still has major feeding issues (I don't say that to discourage you, just to tell you that I can co-miserate!). I agree that he needs an eval by a Speech Pathologist w/feeding- oral motor and sensory - experience. This is very common for kids w/Ds. I'm also a SLP but I didn't have a lot of experience in this area until Will started having difficulty. There is a lot I know now that I wish I'd know at Bennett's age.

    One of the first things I learned is that kids won't put anything in their mouth that they won't touch w/their hands. So, keep doing lots of sensory play w/food! In Will's case, his issues are a combo of sensory defensiveness, oral motor skills being delayed, and plain old stubborness! Also, many kids have difficulty with the stage 3 type foods - smooth, pureed foods with lumps of veggies or meat. They can't handle the combo, so it's okay to discontinue that or seperate them. In terms of oral motor strength/skill - the jaw is the key. It has to be strengthened before the lips, cheeks and tongue can do their job. He won't be able to lateralize his tongue (or properly) until his jaw is stable. Keep using the Nuk. There are many, many strengthening exercises that can be done by your tx or yourself usin that or chewy tubes. Strengthened oral motor skills result in improved articulation when he starts talking, too. Talk Tools, Inc. (Sarah Rosenfeld Johnson) is a wonderful resource - ask your SLP about it. Another good resource for you or your tx is Marsha Dunn Klein at The title says it's for kids w/Autism, but it is general info for any child dealing w/feeding issues.

    I know you don't want to add another tx, but this is something you can get a handle on now that will make your life much easier later! Again, I feel your pain - I'll pray for your little man's feeding issues if you'll pray for mine! Good luck!

  8. Wow. You're getting tons of great advice and I don't have anything new to add but want to cheer you on and let you know you're already doing a stellar job. Peyton is now 13 months and although he will pick up Cheerios fairly well now, using a straw, spoon, or feeding himself anything with a soft texture? Forget about it! Even to start getting him to eat something textured I went through probably two weeks of lots of gagging with him as my OT said that's just what he'll do as he gets accustomed to it. And I wasn't overly alarmed by it, as long as it wasn't actually choking. But I was just persistent in introducing textured things. Like on top of his pureed veggies or fruits I'd place a Cheerio or pea or carrot (cooked and soft of course) and his little tongue would push it right back out until one day he actually shifted it to the side and gummed it (his third tooth just erupted this morning, so he's lacking in that department :). But like everyone's saying, Bennett will get it in due time, probably even if you don't change anything you do, he'll get it just fine. Keep us posted. :)

  9. have you tried cutting the socks for his hands? Cut a hole for the thumb and forefinger and keep the rest covered. It will increase his pincher grasp on things. Also, don't put too many cheerios (or whatever) on the tray at once. Just one at a time. We've been doing play with noodles (uncooked) practicing picking up with our socks on out hands (Parker doesn't love the socks tho). Parker only has two teeth, but he tolerates texture so I am not much help here. I do grind all his foods now, mixtures of fruits, veggies, and all kinds of seeds that I make into an oatmeal. He will do chicken as well even with few teeth. I agree on asking the ST to help with oral motor exercises although I don't know that one more therapy appt is doable or necessary! Teaching the tongue to chew and move thru the mouth properly will help with the textures although he may just be teething and that hurts! Try hot and cold foods, spicy and not. It awakens the senses in the mouth. My ST (oral motor) said too much bland food isn't good. They need the variety of spice and temp. B's doing great, but I hear you on self-feeding. I remember my other kids at this age eating everything themselves...UGH! Hugs!

  10. Maybe he has an aversion to messy too:) Aubrey does. She is more apt to use a fork than she is to use her hands. Maybe try letting him play with a bowl and spoon/fork away from the table and slowly introduce it at the table with something that he likes. Mini tea parties!

    I do still feed Aubrey a lot, since the thought of mess is horrible, but at almost two, she is showing us that she would like to use the spoon herself and that she can do it.

    I'm with the speech lady...never hurts to have an eval and nothing says you HAVE to pick up services, but nice to know if they can help. You could also pick up services, but maybe just once a month or something to start.

    Hang in there and let us know how it goes.

  11. I'm loving reading thru all your comments! But first, I have to say, Bennett is doing some amazing things - I know you know that. But really - Max does self feed puffs, and such, and doesn't have texture issues, but he still drinks from a bottle (which he can't hold by himself). He can't drink from a straw or sippy (we have been working with the honey bear to no avail). He only says dadadada - no other consonents (sp?). He still has reflux. And he doesn't sign at all yet. We are having a feeding avail next week. I'm all for the theory that they'll get things on their own schedule, but I if I can do something to help him along, then I'll try. I also just want to make she Max isn't aspirating liquids or having some other issue along those lines, since his issues are with liquids not solids. But some friends ST told them to try intense foods that make their son's mouth pucker, etc. It totally worked with his mouth muscles. He no longer drools or gags and can use a straw. I know that's not the issue you're having, but I think an evaluation might be beneficial, not necessarily needing ongoing therapy. Good luck.

  12. I had a feeding eval (before he turned 1, he is now 15 months) from a ST and she seemed to think he was on the right track even though I wasn't so sure. She gave me tips like crumbling graham cracker into baby food. I've heard of spicing up the food too! My son hated baby food but loves his daddy's cooking. Right now I am sneaking pieces of fruit in his vanilla yogurt. He does not know how to take bites though-shoves whole cheetos in his mouth! He is on a straw cup but refuses to hold it and loves to throw it! Bennett sounds like he is doing great! I know it is frustrating. Owen seemed like he wasn't doing anything new for a long time and then he just started doing alot-gross motor wise. It seems when little ones excel in one area they slow down in another. The feeding will come. I'm thrilled Bennett is crawling! My little guy is still scooting away on his bottom! ;) By the way, I have him in just a diaper most times we are eating and go straight to the bath tub when finished!

  13. Magdalena just started finger feeding a couple weeks ago and she's a little older than Bennett. Before this, she never put anything into her mouth. But it seemed like once she got to where she needed to with certain fine motor skills, picking up bits of food (and paper and fuzz) and putting them in her mouth came naturally. If he's already using biter biscuts and the mesh feeder, he is showing that he can grasp food and put it where it needs to go. I think he'll get it!

  14. My Jimmy just turned two and I think the gagging stopped like 3 months ago. He even had trouble drinking liquids till not so long ago. He will now pick up lots of things on his tray. He does recognize the stuff he likes and will throw off the stuff he doesn't like or doesn't want to try. I haven't even started with the spoon yet. You are making me feel like we are way behind there. Jimmy had no g-tube or feeding issues when he was younger. My guess is that he's not that hungry since he is downing 8 oz of milk. My daughter, typical, barely ate anything till I took her milk away. She now eats a normal amount. I realize you might not give him that all the time but my daughter loved milk and everything else was a far away second. Good luck. We have a speech therapist which has helped us a lot with the feeding issues.

  15. At 2 1/2 Luke is entirely self-feeding EXCEPT for with a spoon when I don't want him to get messy- like yoghurt just before going out ;) -and he won't touch fruit. As in won't hold it or eat it, unless it's pureed on a spoon, or in one of those mesh thingys. He eats everything else including veges with a fork, spoon or with his hands. The best thing I ever did was to sit the three kids all together at a little table and let them go for it. He is so keen to copy them that this was the start for him. Maybe do it outside and get the dogs to clean up the mess- lol! I found the feeding thing stressful with my eldest too. Good luck, and get the eval when you feel ready.

  16. I would go ahead and get a feeding evaluation. IT sounds like Bennett is doing pretty good but a couple of things that struck me when I read it reminded me of comments Sara Rosenfeld Johnson made during her evaluation of Abby. We've been getting oral-motor therapy since Abby was about 5 mos old. You can go to her website and search for a therapist that is trained in your community- or if you can't find one email her on her blog with questions or just call them.
    The thing that strikes me is to find out what is preventing Bennett from eating. If he can mouth toys you know that he could lift food to his mouth. Be careful of the gagging. one thing SRJ had said was that every child wants to eat- when they aren't ready to eat if we make them it could create a food aversion down the road (I'm not saying there is one now- it's if they repeatedly gag on something they'll learn that it isn't safe). With Abby we treat the trouble as strength and motor planning. We are just now getting her to eat some solids. Up until even a month ago she gagged on any solid food- even stage 3 with mixed textures in her mouth.
    It sounds to me like you need someone like SRJ or someone trained by her to help work through this. Of course I say that b/c it's working for us- Abby has had a ton of feeding issues going back to nursing. We've also gone through a couple of therapists to get to someone who could help us. I wasted 3 precious early months with a supposedly trained feeding therapist who just watched Abby drink from a bottle while hooked to an O2 sats machine and didn't have us working on any exercises. It sounds to me like maybe strength exercises could help. The first step with that is to get an infant toothbrush- the kind that fits on your finger and lightly press down on the back molar area of the jaw to stimulate a bite response. Try that and see if he can do it- if he can't that might be a sign that he doesn't have the strength to chew solid foods yet. I hope that helps- feel free to drop by and ask any questions!

  17. Oh my gosh I've said a hundred times since Aidan's birth that I am thankful most of all for his feeding therapist!! Some OTs are qualified to do feeding therapy, but feeding therapists are speech therapists who are trained in feeding therapy. Ours is an absolute God-send!! My Aidan, who has Ds, is 23 months old, and only recently started picking up foods off of his tray and not gagging when he has large chunks in his baby food. It sounds to me like your little man is doing just what Aidan did at his age! Our feeding therapist explained the difference between foods you can mash with your teeth, and foods that need to be grinded with the teeth, like meats. My Aidan is able to lateralize the food with his tongue (move it around) and mash foods with his teeth, but isn't proficient in grinding tougher foods. But he IS getting great with lumpy purees and feeding himself!! He is now (as of two weeks ago) able to self-feed himself breakfast- a whole diced banana, cheerios, and a straw cup with milk!! Our local Down syndrome association said to expect development by half in the early years-if you expected your daughter to self-feed by one, expect your little man to do it by two. This has been very helpful-and very true for us! I would definitely get a feeding therapist-I know one more therapy is daunting and time-consuming, but they have SO many neat tools and tricks-this is the one therapy I couldn't have lived without!!
    :) Melissa (from Baby Center!)

  18. Hi,
    I just recently found your blog. I have an 18 month old with DS. We went through this earlier this year. My son had bad reflux issues and the ENT changed his meds to stronger stuff, which fixed the reflux. Reflux gave him a sore throat and made it harder to introduce texture. We kept working with the Nuk brush to decrease the gagging issues. Once that was fixed then he made progress. Also, giving him messy stuff that is tasty had helped in the long run, ketchup, barbeque sauce, fruity pancake syrup (Smuckers has a nice variety, I love the boysenberry). Another thing, I successfully switched from the bottle to the sippy using the Munchkin brand of sippers, which are slower than the other brands-look for Sponge Bob cups, they are at Walmart. All kids are different. You have lots of great advice.

  19. Our little guy will be 2 on Wednesday so I can tell you that he will get it. We gave Little J large items like pretzel twists to gum/chew. Sometimes little foods can be difficult if their fine motor skills aren't developed. We also handed him food directly. Handing him little pieces of food like Cheerios is good fine motor practice. My advice is to keep offering different types of food: texture, flavor, hot/cold. Offer him a spoon and fork to hold. He's young and before you know it he'll be eating 2 pancakes, 1 sausage link and banana slices for breakfast. You'll look at him with amazement and wonder when he learned to eat like that. Trust me it does happen.

  20. Hi I have just found your blog for the first time Bennett is beatiful !
    my baby Owen is still very fussy with foods but this is how I started out getting him to accept finger foods, he wouldn't eat anything off the highchair table at all throwing everything off. So one day I got some puffed rice poured about a 2 cups of it into a very big heavy mixing bowl (one he couldn't tip over easily) and plonked him on a picnic blanket on the floor with the bowl of puffed rice between his legs, I did this every day for a week, playing in the puffed rice, showing him he could eat it - actually his toddler brother showed him this, he soon started to shove handfuls of puffed rice to his mouth (and only get one or two in) then I transfered the rice puffs to his highchair table and he accepted them being on the table and started eating them, he is know starting to use a pincer grip and will eat 1cm sized pieces of fruit, rice cakes, biscuits and meat (but NO vegies!) he still tosses things off the table but usually only to indicate he doesn't like it or he is full.


I love reading your thoughts so go ahead and leave a comment!