Monday, March 24, 2014

A Mom Asks For Advice

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!


Anonymous said...

I would start with getting the child to voice her needs with signs or other methods before meeting them. This takes time and patience for both care giver and child. I had to do this with my now 18 year old to develop language skills. I made her attempt to tell me what she needed before I would help her. In time she developed a large skill set that included the ability to communicate her needs/wants and basic language skills. She went from a functional classroom in school to diploma track. Meltdowns in public to participating in the community. Baby steps with expectations that the child will attempt to communicate in some way (signing, PECS, attempted speech) and build from there. It is hard and takes time, but you all will get there.

MichiganMom said...

First of all, tell this Mom how good she is to want to change this, and that others have walked in very similar shoes and we understand! All people have to learn to wait in their lives - I am sure you have met so called typical adults who never really mastered this skill.
The basic skill the child needs to develop is the ability to self soothe while waiting reasonable amounts of time to get what she wants. It seems she may now be able to request the song, or tv show. She may be very uncomfortable or even scared, emotionally or otherwise, away from her regular routine.
My youngest daughter had some similar issues, hers weren't as extreme as these seem, but perhaps some of our strategies could be adapted for this little one. Alison did have a lot of trouble if she wasn't constantly 'entertained' as a very young child. She loved 'The Itsy Bitsy Spider' and would have had us sing it to her constantly! To try to teach her to wait and to communicate (rather than cry) to get what she wanted, I would sing just one line of the song, then ask her what she wanted, wait for a vocalization (all she could do) then sing the next line. After a while, the pauses became shorter and shorter as she 'asked' for the next line -soon without me asking what she wanted. Then I upped the ante by thanking her for asking me for the next line, but I was busy (fill in the blank) and she would need to wait for a bit, then I would sing. Waits of two or three seconds soon became 30 or more. Lots of praise for waiting. From there we generalized to waiting for lots of things. Soon, it was 'Mom needs to do three things, then I will be there to put in your movie, wind up the toy, etc. etc. I wold make sure to say now I need to do 2 things, then one, then Here I am to _______! Alison is now 23 and we still talk a great deal about nice waiting, being polite to those around us, being courteous, etc.
Another thing that helped tremendously was working for her to love the songs she wanted on a (then) cassette tape. She loved music so much that we soon identified 6 or 8 tapes she would listen to. We were able to find small headphones that worked for her and with the help of a child style walkman (remember those?) we could keep her content when we went out. We had a bag with walkman and tapes on her wheelchair at all times. She wore those headphones in restaurants, stores, in the van, sometimes at family events, at the park, at every doctors appointment (and she has dozens every year) and just about everywhere we went. For years, we gave the doctor that spoke to us after a procedure or surgery her tape player and insisted it was playing as she woke up in the recovery room. An iPod has now changed our lives - so much easier than changing tapes or the CDs we eventually transitioned to, so much less to carry around.
I suggest picking at least one favored activity/show/song and go hard nose with the little girl. She NEVER gets that one thing from ANYONE anywhere in ANY situation without asking for it nicely in whatever way she can. Be ready for massive meltdown, but don't give in. This often works very well (after you get through the tough part at the beginning)but if you give in even once, you set yourself way way back from where you started.
I hope an idea here may help.