A mom to a preschool-aged child with disabilities has asked me to poll you, dear readers, for some advice. I have never met either the mom or the child, so the descriptions below are shared from the words of the mom and the child's nurse. If you have any advice or suggestions, they would both be most grateful!
The child, a little girl who is preschool aged and does not have a definitive diagnosis, is non-verbal, developmentally delayed, uses a few signs she made up herself, and with the help of school staff, is being encouraged to use a PECS system. The child has a g-tube and is fed almost exclusively through it. The mom and nurse will encourage the girl to eat by mouth, but the results have been disappointing so far.
The girl is used to having her every need met, even before she realizes she has the need. Her mom describes her as having no patience whatsoever. The child doesn't play with toys much, but rather spends a great deal of time in front of her favorite TV show. When not watching TV, she likes her nurse to sing her favorite 5 nursery rhyme songs over and over and over...
Going out in public is very difficult for the child, the mom and the nurse. Even a trip to the doctor's office results in a major meltdown if there is any wait time involved at all. Shopping trips are the same, and eating out in restaurants is impossible.
The nurse and the mom feel enslaved by the child, and want desperately to expand the child's horizons. But they don't know how. When they have brought the issue up with the pediatrician, they tell me the pediatrician says to just force the child to go out more and eventually she will get used to it. But the mom and nurse don't like that approach.
So, they are both asking for advice...and that is where you come in. We all have so many years of experience with our own children, and both are hopeful we can draw on that experience to help them. They said to tell you thanks in advance!