It is of course our desire to see all of our kids learn to
be advocates for themselves, but this is even more so the case with Myles. As
an individual with Down syndrome, we are working to help him become a
“self-advocate,” where he is able to advocate for his rights, wishes, and
needs. I think he is well on his way…
Those that know Myles well, know that although he has a
great smile, and can make anyone feel welcome and loved, he is NOT always
happy, and honestly, not always pleasant to be with (I mostly feel this way at my 5AM wake up calls). He can be pesky and so
super-duper persistent. This is great sometimes – like when he wanted to learn
to do the monkey bars, and he stuck with it and kept practicing even when it
got hard and took him longer to learn than most other kids. He didn’t give up,
and now he can do the monkey bars all on his own.
It’s not so great when he gets something in mind that he has
been told he cannot do or has to wait for. He will push, and push, and push
until he either finally gets his way, or is willing to give up on it, which he
doesn’t do without a stomp and a grunt to let you know that he is not a happy
camper.
The other night he got “stuck” as we refer to it and was
incessant about requesting that he be allowed to bring money to school for the
book fair. Gilby reported to me that after Myles had gotten off the school bus,
he spent an hour and a half stating, “Money, money please, money NOW, money
book fair, money school, money backpack,” and several variations thereof. Myles
emptied Ryker’s toy cash register and wadded up the fake money to put in his
pockets. He also resorted to carrying around a fake credit card. Gilby told him
(several times) that he would go to the book fair with Myles on Wednesday night
to pick out a book. Myles was clear that this wasn’t good enough, and he wanted
to bring the money to school.
After I got home a bit later, Myles started in again.
“Money, Mom. Money book fair. Money NOW!” He was again incessant. Knowing Myles
and his excellent receptive skills, we thought it was likely that his teacher
had said that kids could bring money to school to buy a book, rather than
simply make a wish list for their parents. Myles clearly wanted to be one of
the ones who brought money – but unfortunately, he doesn’t have the expressive
language to be able to give us the whole scenario, so he just boils it down to,
“MONEY NOW!”
Nervous that I would not be able to get him on the bus the
next morning without money in his pocket, I texted his teacher to see if kids
were actually allowed to bring money to school. She responded by saying that
yes, the kids had been told they could bring money, and that Myles had his eye
on a couple of books to buy.
We sent money in an envelope and gave Myles instructions to
buy one book. When I told him he could give the money to Mrs. Davis (his
special ed teacher) when he got to school, he replied, “No, Lerner,” (Mrs.
Lerner, his 2nd grade general ed teacher). Not only does he know
exactly what he wants (MONEY), he also knows exactly what he plans to do with
it, and although his ways can sometimes be unconventional, he already advocates
for his rights, wishes, and needs. People just have to be willing to listen…including
his parents.
Myles and his book fair book.
