If you ask me, much of parenting revolves
around whether or not we teach our kids not to be selfish/self-centered. Sometimes, it’s
pretty cut and dried. If a family orders one pizza for dinner and the
ever-hungry teen takes the entire pie to his room before anyone can take a
slice – and no one says anything – we can all agree that family has allowed the
son a selfish moment. Another family orders one pizza for dinner. The kids rush
to grab a slice, but dad has them wait until mom is seated at the table. (What
an awesome dad to ensure mom is actually sitting for dinner! Ah, hearkens me
back to “A Christmas Story”; “My mom hadn’t had a warm meal in…” But I digress.)
This family is teaching their kids that dinner is a collective experience.
Everyone needs to eat, meaning each member of the family should be sensitive to
the hunger of the others, even if this means taking a little less than they’d
like. It’s a lesson in being selfless.
Being in a field where charities
abound provides a unique perspective on giving. For most, money is tight but the
need for advocacy, education and learning about girls on the autism spectrum is
great. I still do what I can, but over the years it has come with a cost. This
caught me by surprise. When you are in this position, the number of people who
approach you to write (for free), speak (for free or for “lunch”), endorse and
give is astounding. Early on, I did this with gusto. After all, my belief was
we were on the same page: advancing the knowledge of autism in girls.
After a while, the costs (time
and money) of doing this added up, and started putting us in the red. I really
struggled with charging for my time because I believed in good faith I would be
compensated, even if only a small amount. I was wrong. It became clear that for
some people, it is more about who they could get for as cheap (read: free) as
possible to accomplish their goal. I recall one conversation when I finally decided to request my going
rate. I was snapped at. Ironically, this individual was getting paid to ask me
to work for them for free. I spoke to a few peers who encouraged me not to feel
badly, as authors do need to eat, have shelter and take care of their families.
And, no, most of us don’t make much at all, contrary to what life was like for
authors 20 years ago.
Since then, I took a few months
to think about what I can realistically give of my time and finances, and where
to place the boundaries. I have joined with a group of moms where my monthly
blog is now accessible, and am thrilled to be a part of their team. This I
continue to do without compensation as I believe in their mission, and is the
only such agreement I have. It satisfies my need to contribute to the greater
good without burnout. I also chose to create a private “list”, per se, of
charitable causes I will contribute to, as able, as it is impossible to give to
everyone who asks. And, honestly, after raising a “spectrum kid” and taking on
too many “gratis” events, I’m still working to get back to where I am earning a
living as opposed to giving it away. (This is why I run an Etsy shop and Zazzle storefront.)
This brings me to an already
mentioned uncomfortable topic. And I’ll tell you right now it is awkward, and
likely will not apply to most of you reading this. Those of you who know me well
understand how hard it is for me to put this in writing for all the world to
see. (But you also know my heart, and I thank you for that!) It’s about doing
things for free. Here we go…
If you want me to write or speak for you, I will gladly do so, and can quote you my
rates. Yes, this is awkward for both of us, but it takes time to do these
things, and do them well. I do offer discounted rates for certain groups. I am
unable to barter.
If you would like me to donate to your cause, kindly accept “no” if that is the answer
you are given. Yes, I know $20 (or so) isn’t much, in a sense. But when people
continue to ask you to give, it is impossible to give to all who ask. And I
have a ton of people who ask. However, I will gladly look into your cause and may consider it for the next calendar
year.
If you want me to follow you on social media,
promote your work, etc., etc., take
a moment to ask yourself “why?” Are you trying to boost your numbers, for
whatever reason? (Yes, I can’t begin to tell you how many people follow people –
even in the charitable world – then unfollow them to make their numbers look
good. Truly sad.) Is this something you really feel passionate about? If I were
to ask you to do the same, how would you feel about it? (I do promote that
which I believe in, when I have the time.)
If you disagree with my perspective, will you move forward to present your own
in a polite manner? Or would you rather work to tear mine down? My perspective is
just that – mine. It is the perspective of a mom of a child with Autism
Spectrum Disorder, who has engaged with countless others on the Spectrum, as
well as those who are parents or teachers of them. (Mine is not the perspective
of a counselor or physician, to be clear which, apparently, has to be spelled
out for some.) My family welcomes the perspectives of others and we do fully
realize they will vary. We are strong proponents of listening to other voices.
How else will others begin to fully understand girls on the autism spectrum if we
mute or discount them? And my daughter does know when others talk smack. She
has worked so very hard to overcome obstacles Asperger’s puts in the way. Would
you say these things to her face? She reads them. She knows. This does not apply to most everyone. Thank you to the MAJORITY of you who have
been so encouraging and life-affirming!
This brings me back to the Pizza
Analogy. Throughout this journey I have met countless selfless individuals
whose goal really is to make a difference. Like anything else in life, a few
loud voices work to squash a mountain of good as all they can see is their own
desires, whatever they may be. Others push so hard for their cause, that if you
don’t “give”, you must not be on board. In doing so they foster resentment
instead of compassion. Once I realized the “guilt” I was feeling was an outcome
of working not to make others upset or disappointed in me and rather a result
of them not getting what they want vs my own goals and principles, I was able
to move on to both make a difference and (financially) support my very own
Aspergirl. (Yes, not all who ask are
self-centered – not by a longshot, but those who perseverate or bully are.
Yes, I have been bullied by an adult since releasing my book.)
Folks, there is more to life than
money. I gave much of that up to raise an Aspergirl who is now headed to
college. She will thrive there because of the work she has done to get to this
point, which started with both mom and dad in the early years. I gave up going
after a career and financial security for years of therapy visits, social
skills training, etc., for her. And it is paying off in spades. After all, she
is our daughter, our charge. It’s about getting her to where she is able to
live on her own and make a positive impact on the world around us. And she is
headed there, full steam ahead.
Throughout this journey of the
past several years, I’ve learned quite a bit. I’ve met incredible moms, dads
and Aspergirls. I’ve gotten to know renowned experts in the field, and am the
better for it. But alongside these positive life experiences is a side I was
completely unprepared for. Autism is a passionate, complex subject. In part,
that is why I wrote “Asperger’s in Pink”. I wanted to share our story to help
others. Money or fame was never the goal – or even annoying people. It was simply
to tell a story from a mom’s perspective. My daughter read the book before it
went to print and gave her approval. My husband virtually runs the Facebook
page now. It is, indeed, a family affair. In fact, Kristina has written a work
of her own, and is waiting to see if it will go to print. It’s her turn to have
her voice heard without mom. At least she knows what the road ahead will look
like.
Thank you for reading to this
point. This has to be one of the most awkward blogs I’ve ever written. But a
few things have happened to birth it. Maybe now my mind will be free once again
to do what I love to do – write.
All the best,
Julie
