Susan's Blog

Wednesday, March 10, 2010

Excerpt Six From AMSG

Chapter 6. Moving beyond “You and Me against the World:” Getting Help from Others

…Unfortunately, it’s a common experience for most autism
parents, at one time or another, to feel humiliated by strangers.
Or, if it is not humiliation, then we might experience just
plain lack of understanding. Paulette, who calls herself my
twin sister in Alabama, told me of the challenges she faces
going into public with her daughter Punkin. “Punkin and I
have had some good experiences and some bad experiences.
I really understand other autism parents when they say how
proud they are just to be able to go places and it’s normal.

I am invited to go and see The Nutcracker ballet for Christmas.
I have decided that Punkin will not be going. Everyone
wants to know why I am not taking her when my best
friend is taking her girls. I find myself getting defensive.” Paulette
has a long memory of her experiences out in the world
with Punkin, and it makes her think twice about going any-
where with her, just like I still do with Nat. “This summer,”
she said, “when it was just the two of us and the meltdowns
were happening on a regular basis, I couldn’t get anybody to
help me—but they are still quick to criticize my decision not
to take her to the ballet.”

Paulette continues, “They just don’t know how much I
would love to take her, but this is going to be a trip that I take
just for me. Most of the time when we go places, I say, ‘This
is for Punkin,’ and if I have to spend a little time in the restroom
calming her down, it’s OK because I am doing it for
her. But when we get up because she needs to go somewhere
else to calm down, nobody gets up and says, ‘Do you need
any help?’ Yet they still want to criticize.”

…Probably the most helpful happiness strategy for an autism
parent is finding lifelines. Lifelines are the people in our lives,
outside of our spouses or partners, who truly understand our
children. Lifelines are the people who “get it,” as many autism
parents say. You can leave your kid with a lifeline for a period
of time—an hour, a weekend, it can vary—and you don’t
have to worry about it. These are the folks who let us escape
and rejuvenate. Lifelines help our children, too, because they
provide them with bonding experiences beyond Mom and
Dad and help them to develop more independence…


That is some beautiful writing, Susan! Brings tears to my eyes.

— added by Donna on Wednesday, March 10, 2010 at 4:41 pm

I love the IDEA of a lifeline, but other than my sister and mom, no one else have ever ever asked if they could take my daughter out for a fun saturday morning. Never in 12 years.

That is really sad.

— added by Anonymous on Thursday, March 11, 2010 at 6:04 pm

Pretty much only my mom has as well. Still, that's something, right? Don't you find that there's usually only one set of grandparents who do that kind of thing?

We usually have paid for the people to watch Nat, but that's kind of what I'd expect…

— added by Susan Senator on Thursday, March 11, 2010 at 6:58 pm

This is why I started my autism mothers' group. We are each others' lifelines. We "get it." We also pass around phone numbers of safe, autism-trained babysitters. Most of us don't have family in the area, so using family members as sitters or respite just isn't an option. I encourage all the autism moms out there to do what I did: if you can't find your own comfy little autism bubble, make your own.

— added by ASDmomNC on Friday, March 12, 2010 at 8:39 am

Autism Bubbles! Love it!

— added by Susan Senator on Friday, March 12, 2010 at 8:40 am

Getting treated in a humiliating manner by stangers I can take, it's getting treated in a humiliating manner by other parents of autistic children that is most hurtful to me.

— added by Sharon L. on Friday, March 12, 2010 at 3:08 pm

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