I am so positively thrilled to have a guest post by Adrienne Ehlert Bashista, the editor of Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories. This book has become my new best friend, literally. I keep it on my bedside table to read each night and go to bed comforted in knowing that I'm not alone in my struggles of raising a child with a neuro-behavioral disability. Thanks to Adrienne in all of her efforts to build a community of support for parents and to provide that little bit of extra strength to help us all get through the day.
This past Sunday I moderated a panel discussion of the book, Easy to Love but Hard to Raise: Real
Parents, Challenging Kids, True Stories. I co-edited and
contributed to the book along with 32 other parent-writers. The panel was at a
local bookstore and about 15 people showed up – friends and supporters of the
writers, including my mom, and a handful of special needs parents.
I was plowing through my presentation, starting with a
nervous and slightly awkward introduction to the book and I got to the part
where I talk about how the essays, the blog connected to the book, our Facebook
page, and our brand new forum had been lifesavers for me in a time of intense
stress, isolation, and darkness, proving to me that not only was I not alone in
my feelings and worries and frustration and grief of trying to help my child
with a neuro-behavioral disability, but I was actually surrounded by wonderful
people who understood what I was going through and who could help…
And I started to cry.
So embarrassing.
Part of it was insecurity and lack of sleep (my child’s been
having some serious sleep issues lately), combined with anxiety about talking
in front of an audience and add to that the frustration of having to pick out
an outfit I could wear in front of an audience since I spend most of my day in
yoga pants and stained sweatshirts and I’m never prepared for things like this.
Oh – and the 10 lbs I’ve gained from too much sitting didn’t help much either.
But mostly, I cried because I am truly touched by the
community I’ve found through speaking out about my child’s special needs and my
feelings about it. Overwhelmingly
touched.
Three years ago when Kay, my co-editor/co-conspirator and I
dreamed up an idea for a book I was in a personal pit. My son’s behavioral
issues had reached a head, he hadn’t yet gotten the FASD (fetal alcohol
spectrum disorder) diagnosis that has informed our treatment, intervention and
parenting decisions since then, I was
working 30 hours a week, my husband was working 100, my son’s first grade
teacher sent a note home every single day detailing all the things he was doing
wrong in school, my friends had started avoiding me because all I did was vent
about how rotten my life was, my hair started to fall out and I gained 20 lbs
in about 2 months flat without the pleasure of eating delicious foods to get
there. Stress was making me sick. I felt alone and lonely and pretty hopeless.
But then the essays for the book started coming in and I saw
my feelings in other people’s stories. We started the blog, and I felt more
connected, then the Facebook page started growing and growing and growing…and I
realized not only was I not alone, that there were thousands, probably
millions, of other moms out there just like me – moms who were puzzled by their
children’s behaviors, were trying everything they could think of to help their
kids, were taking them to specialists and doctors and therapists and trying
dietary changes and new routines and behavior modifications from every book
they could read about and still were not seeing the changes they wanted to see.
These were moms who felt judged by friends and family and even random people in
the grocery store, angry from dealing with unforgiving schools that treated
them as if they were the enemy, and just plain exhausted from having to think
of all of this stuff all of the time. Moms who never ever got a break because
the minute they got a handle on one thing – maybe wrapping their heads around
giving their kids medication, for example – something new started up.
Medication side effects. Problems with friends. A new grade, a new teacher, a
new school year. New challenges.
So the community grew. And I felt less alone. I made some
life changes, including quitting my job and treating my illness. My son got out
of the classroom that was so difficult for him. And the community grew! Because
I was able to worry and vent to people who knew where I was coming from, I was
able to reconnect with my real-life friends. Because I was getting lots of
good, seasoned advice, I was able to start solving some of my child’s problems.
I felt empowered. No longer lonely or isolated! All because I found community!
I got out of my pit. And now I help other people get out of
their own pits! It’s such a terrible place to be.
If you would like to be part of our community, please
connect! Our blog is Easy to Love but Hard
to Raise, on Facebook we’re at easytolovekids. On Twitter
we’re at #easytolovebut, and we
have a brand new forum so that
people can post about their children’s issues and their own problems with a
little more privacy than is afforded on Facebook.
Comments
Post a Comment