I feel like I can relate to most of the challenges. Brayden used to
bang his head all the time, but unlike some of the others, he was not
doing it for attention, or frustration. It was a sensory craving for
him. Banging his head was a self stim behavior. He did it all the
time on the floor and on the walls. He would actually put his
forehaed on the hard floor sometimes and just push it along the floor
letting his head bump up and down on the floor. He always needed
sensory input on his head and chin. To try and control it, we got som
vibrating toys that he could put on his head and tapped his forehead
for him when he wanted to bang his head. He has grown out of banging
his head now, but he still likes vibration or any input on his head
and chin. Zachary craves the same type of input, but he hasn't gone
through the banging phase as much. Both of the boys have feeding
problems too. They will both eat by mouth, but neither of them will
chew. They have been in feeding therapy for the past few years and
they are definately imporving on what textures they will take.
Actually, I think Zach is just learning how to swallow bigger things
whole. Feeding leads me to one of my biggest challenges right now and
that is behavior problems and tantrums. I don't think the boy know
when to stop eating and they will go on and on as long as I let them.
But of course I have to stop them and Zachary has major tantrums,
crying, spitting, and blowing his nose at the end of each meal. We
have tried all sorts of ways to transition him, but nothing has worked
yet. He also spits when he is not upset though. That is his sensory
stimulation. He does it all day long. I can't even take him to the
store anymore because he spits all over me and anyone else that might
be within a certain radius of our cart. Brayden is having tantrums
too, but his are fairly short lived and managable right now if I just
ignore him. We occasionally have bad ones and I just have to ignore
him and move him away from me or his siblings. His other problem is
still his attention problems. He really only stays focused on
something for less than a minute. So far he has tried several
different meds with no luck. I think he actually might be getting
frustrated that he can't stay focused. He of course also has the
frustration when trying to communicate. He has some words and some
signs, but of course he is hard to understand. We have tried working
with a communication board, but so far, he still doesn't understand
how to use it. He thinks they are toys that make noise and will just
touch everything randomly. We are working on simple picture
communication in hopes to move to the board in a year or two. Anyway,
Thanks for everyone's responses. I enjoy reading everything and
taking tips from other posts.

Linzee

--- In 11q_disorders@yahoogroups.com, "linzee_carroll"
<linzee_carroll@...> wrote:
>
> Hi everyone! I am interested in having this group be a little
> more active. :) I thought I would start coming up with some
questions
> that people could respond to, and maybe it will prompt other
> discussions, or at the very least, we can get to know each other a
> little better! The responses will also help other parents of 11q
> children looking for information. Feel free to respond if you want,
> or ignore it if you don't. Or, if you have a good question, please
> feel free to post it.
>
> So here's the first question:
> What (currently) is your biggest challenge with or related to your
11q
> child?
>