Maggie's Mom?

[laurasnowbird]

Hey, just wondering if you are out there somewhere? I haven't seen any posts by you for awhile. Has anybody heard from Robin M?


Post up, girl! ;D

[MaggiesMom]

Hey Laura!

I'm here. Just checking in about once a week now. I'm still going to school part time plus homeschooling, Maggie's stuff and life in general. A little more busy than usual! Thanks for asking!!

I was just thinking about you! We are now seeing feeding therapist number 4! Can't seem to find one that wants to take the time to work with us. They are all so busy and we have to travel to see them. It's a pain all the way around, but we have to do something. This child is still not biting or chewing!

We're at the "playing with our food stage". Trying to get her comfortable with getting her hands dirty and getting it near her face. Not happening yet, but she's not screaming when we put her in the seat now. Baby steps.

How's Ethan doing with his eating?

I'm off to get Maggie's lunch. Take care.

Robin M - Maggie's mom

[MaggiesMom]

Oh Laura, where are you?

[laurasnowbird]

Hi Robin!

I'm here, but barely, LOL! I'm glad to hear that you feel you are making some forward progress, but sorry to hear that you are having such bad luck with feeding therapists.

Ethan is actually doing quite well, considering a little over a year ago we were dealing with gag and vomit! He is self-feeding (with a spoon) his oatmeal cereal in the morning....finally a break for Mom! Woo hoo! He is eating a number of different table foods, but I have to tell you that didn't come easily. We took his bottles away at 27 months, and switched him to a straw, which was very stressful, because when I took the bottles away he didn't know how to use a straw. That was five days I never want to relive again.

For example, he will eat (with assistance) spaghetti, pizza, sloppy joes, fish, chicken, grilled cheese sandwich, rice, corn, peas, broccoli, chili, white bean chicken chili, etc. HOWEVER, I have to be honest with you, it took some SERIOUS strong-arming on my part to get him this far. I have literally had to hold him down to get a bite of something in him, and get him to eat it. At the point that I did that, I had come to the conclusion that Ethan's issues were equal parts oral-motor and behavioral. He was refusing solids because he was (rightfully) scared of them. I decided that he was soooo scared though, that unless I made him try it, he was never going to. I followed up the bite with a reward, and I have to tell you, my little boy LOVES potato chips. So I would get a bite of whatever in his mouth, then give him a bite of potato chip if he actually chewed and swallowed the other food. (You could use any incentive for Maggie, wouldn't have to be food, it would just have to be something she REALLY wants)

The other big thing was making him sit at the table for dinner with us, and ONLY offering what we were having for dinner. NO baby food anywhere in sight. I started out with something I knew he loved (spaghetti) but it was still an awful experience. He wanted his baby food, not that spaghetti, and he kicked the table, and dumped the spaghetti, etc. etc. etc. The first time he did it, I picked him up, said "We don't behave like that at the dinner table. That is your dinner, and you won't be getting anything else". Then I carried him down the hallway and put him in his bed, walked out, shut the door, and set the timer for two minutes. At the end of that time, I went and got him, set him back in his chair, and we tried again. He promptly repeated the bad behavior, I picked him up without saying a word, walked down the hallway and repeated the process. This went on about five times. The last time, I set him at the table and he sat quietly in his chair, but wasn't eating.

Now by the way, in the middle of all of this, his Dad and I were fighting, because he can't stand to see him cry, and he kept asking me what purpose this served. I said "Would you forget for just one moment that he has DS, and realize that he is just being a two year old brat! He needs to minimally realize that he has to sit politely at the table while we eat dinner."

So, that last time, I set him in the chair, (now mind you I never said a word to him after the first time) and started to eat my dinner without even looking at him. After a couple of minutes, he leaned forward and started picking pieces of spaghetti out of his bowl with his fingers. I wordlessly pushed his chair up closer, handed him his fork, and continued eating. The little fart then proceeded to eat an entire bowl of spaghetti with his fork!

I KNEW he could do it, he just a) didn't want to, b) doesn't like change and c) was afraid of food that wasn't in jars.

We have continued to struggle with him, but at a MUCH lesser degree since that day. And to give my husband his due, he turned to me as Ethan was eating and said "You were right, and I'm sorry I made that harder for you!"

We are seeing one of SRJ's associates next week named Lori Overland. We saw her in June of 2003, and I give her much of the credit for giving me the courage to take some of these radical steps with him. She identified his behavioral issues, and noted that he had many of the skills he needed, but was refusing to use them. We are not working with anyone in-between visits, we work with the plan she gave us, and I e-mail her for support. I'm feeling like we need an update, so we see her on next Wednesday. I can't wait!

Anyway, if you want to talk in real-time, give me a call! If you don't have my number any more, e-mail me and I'll send it to you.

P.S. By the way, I was looking back at my post, and thought I should mention that after I have gotten him to accept a food, I don't have to keep up the potato chip routine, LOL! I'm afraid I would end up with a seriously overweight child if that was the case (he's a skinny little thing, though). We simply use it as an incentive, because he needs a powerful incentive to overcome a powerful fear!

[MaggiesMom]

Wow! I thought I was the only one that had to fight to get that first bite in. Sorry to hear that others have to deal with that too, but glad to know I'm not the only one. LOL

Maggie will eat most anything if you mash it up with a fork so she can swallow it whole. She is seriously scared of whole foods, like fingers foods and crackers. She won't even touch them most of the time. We're working on desensitizing her to that. Some fun.

I better run. Take care and let me know what your therapist says. I'd love any great ideas.

Robin M