A network to share best practices for children with special needs

What help can you provide?

My grandson is disabled. I came in contact with a co-worker in another country via our web page at work who has a disabled child and we have been sharing stories, heartaches, difficulties.

I don't have the details but she was mentioning feeding times are terrible. He only eats about 5 things and apparently makes a terrible mess with each meal, he is about 2 1/2 years old.

I told her I thought there were or should be Internet groups of parents with disabled children helping other parents?

Is this a place for her to get some tips, ideas? She has been to the "experts" who have apparently not thought it was "as bad as she thinks" and not offered much in the way of solutions.

I wanted to find out who, what, how, this site works before giving her the false hope that there is such an Internet site where she might get some tips, ideas, on feeding problems with a disabled child.

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Permalink Reply by Tobi Isaacs on June 2, 2011 at 1:03pm

I can totally relate to this woman and her struggles with feeding time. I have 4 children and my blood pressure rises 3 times a day; breakfast, lunch, and dinner. My kids are just picky eaters. I once had a doctor who said, "who cares if they only like 5 things...let them eat what they want...they won't starve themselves." I actually believe they won't starve themselves either, but it doesn't make it less frustrating as a mother who wants to provide sustenance for their child. I once read an article that you have to introduce a food over 20 times or so to help them acquire a taste. Here is one article I looked up quickly, but its not the one I'm thinking of. I get through meals reminding myself that it is okay for my 5 year old to eat noodles 2 days in a row because the alternative is eating less or nothing of what's offerred. I try to use distractions like games. My mother-in-law puts them in front of the television (hate it, but it works). My husband used a very cretive tactic for my 5 year old son. He took out dip after dip after dip in our fridge and had him dip his chicken into each one asking my 5 year old to tell him which one he liked best. We must have gone through every saucy liquid in the fridge including whipped topping! The crazy thing was that he said he didn't like anything (except the whipped topping, of course), but in the process ended up eating all the chicken! I know we dont' always have time for this, but it did work. Who knew chicken and whipped topping would go together? Best of luck and I empathize with all the mommies of picky eaters!

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Permalink Reply by Cecilia Cruse on June 2, 2011 at 2:00pm

Corrine: You are a wonderful source of support for this mom. You don't mention this child's specific diagnosis. Is it possible he has some type of sensory processing disorder? Many children who have issues like this are super sensitive to touch, textures, sound (even crunching something in their mouth may be very loud for them) and smell. If this is the case, then I would hope that her local team of "experts" that you mentioned might or should include an Occupational Therapist and/ or Speech/Language Pathologist that could at least give some home program recommendations to work on these types of sensory over responsiveness issues. In addition to Tobi's creative ideas, I might also suggest a book called Just Take A Bite that may give some additional suggestions. I hope this information is helpful and please give her our best wishes for success!

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Permalink Reply by corinne lashley on June 4, 2011 at 1:39pm

Cecilia Cruse said:

Corrine: You are a wonderful source of support for this mom. You don't mention this child's specific diagnosis. Is it possible he has some type of sensory processing disorder? Many children who have issues like this are super sensitive to touch, textures, sound (even crunching something in their mouth may be very loud for them) and smell. If this is the case, then I would hope that her local team of "experts" that you mentioned might or should include an Occupational Therapist and/ or Speech/Language Pathologist that could at least give some home program recommendations to work on these types of sensory over responsiveness issues. In addition to Tobi's creative ideas, I might also suggest a book called Just Take A Bite that may give some additional suggestions. I hope this information is helpful and please give her our best wishes for success!

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Permalink Reply by Sue Wilkinson on June 5, 2011 at 11:49am

Corrine, Cecilia is right. YOU have already done so much by being a good listener. Thanks for being a Grandma that is involved in such a positive way and welcome to the network! As Tobi is suggesting, when a child is not eating or has difficulty eating...it is the most primally distressing things to a mother. In our hearts we internally biologically know that this is our first job with our child. Millions of years can not undo instinct. No matter what any physician reassures us with!

Also, please know that there is no such thing as false hope! At 2 and 1/2 years, there is so much your grandson will teach you. Cecilia is correct in suggesting that there is so much that can be accomplished using a sensory approach to feeding. Let us know your grandson's diagnosis. If his Mom has time to join our network, it may be useful and encouraging for her, too. Welcome!