If you have been following this blog for any amount of time,
you know that my daughter has had trouble at both home and school with
aggression. Her school says that she doesn’t need a highly trained 1:1 aide.
After today, I have more ammo that Princess needs a 1:1 aide or a therapeutic day
school.
My friend recommended the VBS at a local church (not the
church that we attend). She told me that if I told them about my daughter and requested a
1:1, then they would provide her one. Well I did this three weeks in advance of
VBS. The director sent me an email saying that they might not be able to
provide Princess with a 1:1. She said that myself or another family member might have
to come be that 1:1 aide for the week. I am not too keen on this idea.Princess has
never done well when I am a helper in one of her classrooms. I also think that
can be hard for a child to have to have their parent there.
Yesterday Princess did
OK for the first day. She said she didn’t want to go anymore but we talked and
processed on how to make things better. This morning she got up, got dressed
and was ready on time. When I got to the church, she freaked out a little
because the music was too loud. Then one of the counselors came over and gave
her some headphones and her picture schedule of the day’s events. I was
thrilled. It looked like the church got it. Wrong!
A few hours later when I went to pick her up, I noticed that the
counselor called someone on her walkie talkie. I thought maybe it was just a
coincidence that it was at the same time as I walked up. Wishful thinking! It
was about Princess. The counselor told me that director wanted to talk to me. When I
went over to where she was, she told me that Princess had been aggressive. I was officially
told that they did not have the manpower to handle her and keep the other kids
safe. I was told that Princess could not come back unless she had a family member
come. Not gonna happen. I will just figure out something here at our house.
What frustrates me most is that I expect this from sports
leagues, dance teams, Girl Scouts, theater groups etc. but not from the church.
The church IMO should be a place of acceptance for all. Heck even movie
theaters are having special viewings for Autistic kids. I know that this church
did some things to help but obviously not enough. I was told that her special buddy for the week was a teenager.
The director told me that Princess was only listening to adults. She did not have an extra adult to help out with C. She also told me
that she didn't want Princess to miss out on this opportunity but that myself or a
family member would have to provide the extra support my daughter needs. She
does not see that Princess will get teased if her mommy is there to help. I can work to get her more supports at home, school and at our
church but I guess not everywhere. I am still so saddened by this. I wish I
could just tell other moms and adults what it is like to have a kid like mine.
And so I blog about this experience to educate others on what it is like to
raise a high needs child.
One day Mental Illness will be more understood. One day....
BTW- This experience makes me even more grateful that our
church has a really good disabilities ministry.
BTW2- I did ask the director to write a letter to whom it
may concern telling what supports were in place and even with these supports Princess needed
a more qualified aide to help her navigate VBS successfully. Hopefully I can
show this letter to the school district in the Fall.
BTW3- My dh said “ Hey that’s kind of what the school said
about Princess needing you to go on the field trip with her.”
