Subject: Chewing, eating, & tongue mobility

Kathy,

When our son was younger he also had trouble chewing and eating...our OT said his tongue mobility was not as good as it should/could be...she also suggested placing the food farther back and to one side of the mouth...experimenting with different textures was also another recommendation. I was also nervous about choking, but what I did notice that Ben had no trouble with REALLY crunchy things like ricecakes, but a PB&J sandwich was too gummy and hard for the tongue to manage. So we began by giving him things like ricecakes and crackers, as well as thick foods like oatmeal (easy to manage with the tongue) and puddings, tapioca being the favorite consistency.

Over time as he got older tongue mobility and chewing became better. Now he can even handle chicken fingers and hamburgers; however his favorites are still hangovers from the old days: mac and cheese, PB&J on ricecakes, and tapioca (great to stick all the meds in!)...

For drinking, try working with a straw (hard plastic ones are best). Our OT insisted on this, as it really helps with mouth mobility and control. It takes time, but the kids really can master this.

Best wishes,

Jeanne

Subject: Chewing, eating, & tongue mobility

our daughter also had highten senitivity to chewing and uncoordinated jaw & tongue movements. increasing the tactile sensations in the mouth w/ increasing harder foods does help. it is a matter of repetition and not to get them to necessarily swallow it at first. you donot care if they eat the foods just that they practice handling the sensations and moving the food w/ the jaw motin & tongue.

also increase tactile experience on palms of hands & soles of feet. this will improve the child's ability to tolerate in tactile sensations in the mouth.

Subject: Gagging and chewing

Hi - I was wondering if anyone else was having problems with their AS child gagging when s/he sees food. My daughter Kiera (6, del+) has a disturbing habit of making herself gag, and will throw up when she sees people eating in a restaurant, or if I don't hustle that dinner onto the table fast enough. It has really cut into our social life, and we are not as mobile because we can't stop anywhere, anytime to eat unless we have emergency back-up bananas. She also gags when she stands at the sink, and when put to bed, she will stand at her Dutch door and gag for attention, so she seems to do this when she wants something. It's impossible to ignore. Mostly we hold her and tell her she's okay, also remove her from the kitchen, restaurant or sink. As far as chewing goes, it seems like Kiera hates to have to chomp too hard on her food. She hates meat, even soft stuff like hotdogs or sausage. However, everything else in the house is fair game for her chewing. She had therapy at mealtimes in school to help her "learn to chew", and it just seems to get better. I wonder if some foods just feel too weird to her to eat. Maybe these children have more sensitive gums the same way they are more sensitive to warm food or cold ice cream. My daughter used to cry when she ate ice cream, but she kept opening that mouth for more in between sobs. I've only just heard about using melatonin for sleepless mights and would appreciate any information. I know that it's over the counter but I wonder if there is any danger? -Patty Welch

Subject: Re: Gagging and chewing

Jennie used to gag a lot and sometimes threw up. It was caused by odors, garbage cans, creamy & white food (mashed potatoes, whipped cream, dough, etc.), popcorn, restaurants. Always related to food. Sometimes in a bathroom of store. We would distract her and it usually helped, but sometimes not. Many years ago, at about 3rd grade level, a teacher forced her to eat. Held her mouth closed. Needless to say, that teacher is long gone. I often wonder if that is what caused the gagging or it's just something born in AS kids. She doesn't gag much anymore. Janice (Jennie 15+)

Subject: Gagging and chewing

Dear Patty,

Please understand that I am sort of a mania about what I'm going to say. This really has become an obsession with me, and I hope you will understand that I'm trying to be helpful and it isn't my fault that I have lost my mind on this particular subject. Whew.

I believe that our children are and have been communicating with us all along. My daughter Sara, 10, UPD, also has forced herself to gag and throw up when she is really angry about something, and especially when she feels helpless--for example, when a strange therapist is trying to work with her in a way she doesn't like, and I'm standing there not rescuing her.

I think it's important to respect and respond to all their communications, including gagging. What I've said about Sara's gagging may not apply at all to the situations when Kiera gags, but if it does, we've found that responding verbally to what we perceive as Sara's distress, even to the point of interfering with a therapist to say, "she doesn't like to be handled like that; try it this way," has cut down drastically on the gagging. In fact, I can't remember when she last gagged. But I do remember that there was one particular thing her teacher would make her do (can't remember what it was), and Sara hated it and would gag to the point of throwing up, and she'd be sent home for vomiting. Of course she wasn't sick and it would really make me angry, but the rule is, vomit and you're home for 24 hours. I didn't believe she was vomiting because she would be just fine at home, and then one day I saw it, and it was impressive. She was just enraged!

Anyway, you might want to examine closely the situations that foster the gagging and see if you can deal with them.

My neurologist says the melatonin is safe. Dr. Wagstaff who deals with pharmaceutical grade melatonin says you can't know what is in over the counter melatonin, but I know lots of people have been using it for a while and I've never heard of any side effects. It's been a godsend for us.

Martha Sprowles

Subject: Re: Gagging and chewing

Patty, Devin (3AS?, also affectionately known as "the Diva") was and is the same with cold food. I remember when Devin was about a year or so we were out shopping a little longer than expected and like the together mom I am, I didn't plan ahead and have any babyfood with me. (bad mother mark 5003!) I threw caution to the wind and ordered a small dish of frozen yogurt for Devin. From the sound of her screams you would have sworn I was feeding her battery acid followed by a couple of blasts with a blow torch! Today she likes icecream but she still lets out an occasional whine. I think she gets brain freezes (also called in NY, Slurpee head rushes) from swallowing something really cold too fast.

Kelly

Subject: Re: Gagging and chewing

I just had a thought about the chewing problem: don't forget about teething pain! I'm sure some of our kids are stymied in their chewing attempts by this at least some of the time! And they can't tell us that it hurts.

Deanna

Subject: Gagging & Communication

Martha & Patty,

I agree with Martha that gagging can be a form of communication. Several years ago when Ben was not at all interested in eating a particular food, he too would gag at the smell or sight. I think it was definitely behavioral/ communicative. Now he crosses his hands in front of his face and turns his face away -- pretty clear communication I'd say.

When Ben was about 4 I went crazy on the communication aids -- I ordered calendar boxes, took photographs of everything, and even took a sign class. After a consult with Dr. Calculator at school, I have relaxed about the whole issue (not to be confused with not doing anything) and we take a more total and practical approach now. Instead of pictures of objects, if the object itself is handy (i.e., different choices of cereal boxes for choices of what to eat at breakfast) I use the object and Ben consistently points to his choice for that day. I have worked more on signs, too, because I couldn't picture myself lugging around some cumbersome communication device at the mall, for instance. Over time his communication skills have improved greatly. Yesterday, for example, the bus driver was kidding him about popping open his seatbelt. When our aide went to get him off the bus, she laughingly asked him what he was doing to give the driver a hard time? He looked mischievously at her and handed her the seatbelt. Then they all had a good laugh.

On a similar subject, Martha, I'd have to say our school personnel are acutely aware of Ben's physical (but steadily improving) limitations. In fact, school teachers push him in both the physical and mind improvements. I don't feel they "label" him with MR or DD. I also think the children in the class have a lot to do with this, as they often explain Ben's reaction to something to the teacher when the teacher doesn't get it. One summer one of Ben's friends explained that Ben didn't want the green icepop when he was complaining; he wanted an orange one instead. Sure enough: when Ben was offered the orange one the complaining stopped:-) I can't say enough good things about the children in his class. They have been great motivators and friends for Ben, and have helped the teachers immensely too. Sometimes the simple answers to complex problems are best.

Regards,

Jeanne

Subject: Gagging & Communication

Dear Jeanne,

Is Ben in a regular ed classroom? It sounds wonderful. After two years of resistance, I have been converted to at least a consideration of inclusion for Sara.

Martha

Subject: Re: Gagging & Communication

Jeanne

This is a small world---last night was talking with Mary Ann Blotzer on the phone about managed care in Maryland (haven't seen any of that on this chat line---it will come) and mentioned that Susan was AS. Of course she said she had a "friend" with an AS child. I finally asked the name of her friend--when she said it was you, I said "I've seen that name'. Hope you two get together for that vacation---she's met Susan. Mary Ann is great and has done so much to keep us parents focused and sane!

By the way---I consider Susan a professional gagger. Boy---can she get her message across. Yesterday I was talking with her support person --after a few minutes she started gagging---like "get out of here and quit talking about me". I took off first.

Anne (Mom to Susan 24 (UPD)