Okay, my son stopped eating at nine months and ever since then I have had to fed him with a feeding tube. He has had developmental delays and I suspect that he may be mildly autistic, but he has not been formally diagnosed. He can eat, but eats very little. Now he is two and has the g button. Finally after about 2 years of feeding my child with a tube, he is wanting to eat. He will take in enough pediasure/baby food in the day to avoid tube feedings, so he is only tube fed at night. For the first time just recently he acutally asked for something to eat. I can't explain how exciting it is to be able to fed my child and have him willing to eat. He is extremely defensive about people feedig him, but doesn't know how to feed himself things that require utensils. He is extememly sensitive to different textures and will only eat single things. Even things he likes such as peanut butter and toast. He will eat one or the other, but not together. He will only eat the smooth baby foods that do not have any chuncks. (#2 foods) He can eat some table foods, but he does not chew very well. He can only have foods that will dissolve easily. I have just gotten him to take about 4 willing bites (with me feeding him), which is a HUGE deal.
Anyway, if you give him something like baby food with rice crispies in it he will not eat it and the whole feeding will be unpleasant trying to get him to eat it. His speech therapist has been doing this with his feedings at therapy. It turns into a big mess and she wants me to start doing this at home. I don't agree with her. I finally have him learning how to eat and taking some in and I know that eventually he will have to learn to accept those textures, but I want him to eat. I can't describe how exciting it is to see him open his mouth up wide for the next bite, which is something he's never done. I have not even tried green vegetables yet since he is doing so well with the orange ones. I will eventually, but I am letting him practice. I have trouble talking to his therapist bc she makes me feel stupid. It's like she is trying to say that she is the one with a degree and that he needs to continue to be pushed. Why??? I guess I am ranting a little bit, but she just makes me feel like she thinks I am stupid. I am his mother.
I guess my question is am I doing the right thing? Shouldn't quantity come before texture?
Honestly I belive a mother knows best. You know your child and all his little quirks so you will do what works best for him. I think your speech therapist just wants you to keep trying to introduce new foods to him. I think you are doing the right thing and when he is ready he will let you know.
K.,
Hello -- It sounds like you are doing everything you need to be and more. I agree with you that you are his mother and should set the pace with everything he does in his life at this point. I am 20 years old and my son just turned one and I think sometimes doctors in general do not treat young mothers like they know anything. It can be very frustrating but my best advice would be to just put your foot down. Let her know that you appreciate her advice and know that she is trying to help, but that your son is making a lot of progress at this point and you do not want to confuse or frustrate him by introducing something different just yet. Let him get used to eating whatever food he likes at this point so he can build up his confidence learning how to eat. I've noticed that doctors too often try to go "by the book" but we have to remember that each child is different, especially when it comes to something like this. When my son was 3 1/2 months old it seemed like he was always hungry and I was convinced he just needed to eat more, but the doctor told me he was already eating too much and so I ignored my instincts. My son ended up screaming and crying like he was in pain the next day and I rushed him to the doctor thinking something was really wrong and she thought he had some stomach disease and did an ultrasound and they couldn't find anything and weren't giving me any answers and sent him home. That night I told his dad that I was going to try to feed him some rice cereal because I could not stop thinking that he is STARVING :) I did and he was fine - no problem. He quickly moved up to 2nd and then 3rd foods and was eating table food by 6 months - definately not anything like what they tell you. Now I know my son is just HUNGRY ALL THE TIME - he's growing like crazy and so I cannot apply what the doctor or books say for what my son should be doing at his age because its just not right. In your situation you just have to trust your instincts because no one knows your son like you do - and it sounds like you are right on with getting him to eat on his own so just keep on doing what you are doing. Sorry this is so long, but I totally know how you feel about others making you feel stupid when it comes to your child - there is no worse feeling in the world - trust yourself you sound very informed about everything you have tried and are trying with him and be PROUD of yourself because it looks like it is starting to pay off and your son seems like he is interested in becoming more independent - yay!!
Good luck and I hope this helps!
J.
1) Trust your insticts. Do what you know it best for your son.
2) Get another speech therapist. If you live in Iowa just call the main office between DM and Ankeny. I have had good ones and bad ones and my son excelled with the good ones and didn't with the bad.
Hi, K.!
I do not know what type of resources you have available in your area, but we had similar but not quite as severe of a problem with our daughter. She has been quite sensitive to food textures and temperatures, as well as clothing textures, and noises. We found a program here in the Des Moines area that helped her with sensory integration and has been a huge help! They have a program that is focused on feeding issues and through that were able to determine that our daughter's poor muscle tone included the muscles in her tongue to that she could not manipulate foods of certain consistencies. With ongoing speach therapy, OT, and PT, she has improved a lot. You may want to look into some testing at a center that does a lot regarding sensory integration and feeding programs and have your son evaluated there. Again, I do not know what is available in Nebraska, but our daughter attended a program at Child Serve in Johnston, Iowa. Good luck!
I would question why your speech therapist feels like she has any more knowledge about feeding issues than you do. My friend whose daughter had a feeding tube during infancy attended a feeding clinic (this was back east - I'm not sure what's available here) where they taught her all sorts of things about gently eliminating the negative associations her daughter had with food. I wonder if your pediatrician would be able to refer you to something like that - then you'd be armed with a little more information when talking to the speech therapist about it.
I ma in the field and agree that you should probably push your some just a little bit outside of his comfort zone, especially in therapy session,but you shoulh be made to feel stupid! I suggest seeking another therapist that you can get along better with, but keep in mind that they will probably ask you do do similar things. Maybe those things will be easier for you to take if you like the person. Best wishing and "how exciting" for you and your son at his progress!!!
I have an almost three year old with a g button, and a year ago she was taking almost nothing by mouth. Now, she is eating typical "toddler" foods (very picky, but eating!), and only requires one bottle of pediasure via tube at night. I totally understand the JOY of seeing your child eat, and what a long process it can be! I also think you should follow your instincts with the speech therapist...you know your child best! Have you thought of working with an occupational therapist for his eating? They really are going to be more trained on eating issues than a speech therapist...but make sure you get one that has worked with these issues in the past. We went through five OT's before we found a good one, and it has made all the difference in the world!! Also, from my experience, they have always told me variety doesn't matter, just get enough calories into her to get her off her tube. French fries and chicken strips are OK every day (her favorite)...just push high fat and high calorie. We do go to a special feeding and growth clinic...my experience is that most pediatricians don't know enough about this kind of thing...that is what the specialists are for.
Feel free to email me directly if you would like more information! I know it is such a long road, but it sounds like your son is making progress,and that is wonderful!!
Good luck!
It sounds to me like you are right, and so the best way to handle this is thru your regular doctor. The speech therapist is important, but rushing a child is not the best way to go. I have always said in the past that your best allie is your regular doctor, after all they know your child almost as well as you do, well at least medically. Now this only works if you have a great doctor who you trust completely. I have been very lucky in this part. I had to switch doctors a couple of yrs ago and found another doctor who is as great as the one who I had to leave. She helped me when the hospital didnt want to give my baby an MRI because of breathing problems she had a birth. They had to put her to sleep and they were worried about her breathing when she was under. This goes without saying that it is great that they are cautious, however I felt they were going overboard when I had to reschedule for the 5th time, so I got my family doctor in on it, and we finally got the MRI done. Granted the hospital made us spend the night, but I got my way! ;) Good Luck!
PS if you need more info on your son's condition, please do not google it, find a site you can trust like WEBMD.com or Discoverhealth.com. They are doctor ran sites and they will give you outside links to help as well. To Google or search the net will only lead to websites where terrible things have happened to THEIR kid, and most likely its not the norm for that condition.
K.,
I would do what your gut is telling you to do ! If he is eating and making progress then what is the problem. Also you may talk it over with his pedatrician or family doctor.This is just my take on things. Deb Winslow Happily married ,stay at home mom of a three year old.
First off a speech therapist is for speech/communication. She shouldn't be telling you how to feed your child. Second, My son is 8 and only eats bread, pasta, and cheese. I have a cupboard full of noodles just in case he doesn't eat something on the table. He is mild autistic with Sensory Intergration Dysfunction. I look up on the internet how to introduce new foods. It takes awhile but well worth it! I usually just place some on his plate. I don't make him eat it. Then they want you to have them touch it. Again they don't have to eat it. Anyway, this all keeps up for about a week and then...THEY EAT IT! Check out autismlink.com. This is where I found the article on picky eaters and introducing new foods. Third, you are his mom, tell her no. Would you rather him eat or throw food around the kitchen? It's baby steps! Slowly they learn to accept different texture. My son ate part of a sausage sandwhich the other night. I was shocked but acted casual about it, not wanting to freak him out with my cheering. He loved ham as a toddler but for the past four or five years hasn't touched it. Now he wants it again! Tell the speech therapist to stick to speech and check out Sensory Intergration Dysfunction (SID). I'm not saying that he does or does not have it but some of the tips could help in your situation.
K.,
I am an occupational therapist and mother. I agree with others that say to trust your instincts!!! However, there are way to introduce new textures and tastes without your son having to take a step backwards. You should never be made to feel stupid. YOU are the expert on your child...no one knows him better than you no matter what degree they have!! I would suggest asking for an OT evaluation. It never hurts to get another opinion. One idea to start with at home is to give him a regular meal. At the very end of the meal you can try a new texture. Couple it with something he really likes. For example try sweet potatoes with just a small about of bananas mushed in. Start slow and see how he does. If you would like more ideas or just some encouragement feel free to email me....I would love to help!!
This is only my opinion, and I can look at it both ways. BUT, as a single mother myself, I have to choose my battles, and feeding time isn't one of those times. There are things my son won't eat- ie vegetables, and people say I need to force him to do so, I make him try one of everything, but that is it. I dont' believe in making meal time a stressor in my life. If he is eating for you, and things that are healthy, I wouldn't push it. Maybe try a spoonful- or if he is two- tell him 2 bites, then give him the stuff he will eat. Life is too short to stress over food! As for the speech therapist, I am sure she is only suggesting what her job brain is telling her to do, and yes, a speech therapis does preform swallowing therapy, which has to do with the feeding issues- this is normal, so she is only doing her job. But you still have to do what is right with you. ( I let my son sit in the front seat with an air bag, even though the police suggest that it's a bad idea) So sue me!
What does your ped's dr say? If he has just started accepting food on his own, maybe his digestive system is not ready for more? I would go with your gut and check with your dr before trying to "push" him into something he may physically not be ready for.
Good luck.
M. H.
I think you are doing the right thing. Let your son lead the way. Ultimately, he is the only one who can decide what he will open his mouth to eat and what he will spit out.
