Delayed Grieving

Delayed Grieving
by Leslie McCann

I spent five years defending my daughter’s needs to
professionals, to family members, to perfect strangers
and to my own husband. It was five years of pure
hell. See, for some reason, in our society if you don’t
have some sort of professionally labeled & drug-treatable
disorder, then there is nothing wrong with you.

Parents these days have children with all kinds
of problems: hyperactivity, food sensitivities that
lead to undesirable behaviors, sensory issues that lead
to undesirable behaviors, undiagnosed autism spectrum
disorders, defiance disorders, obsessive compulsive
disorders -- the list goes on. Without something
to call it, parents are wide-open to judgments and
attacks on their parenting choices.

I was the wide-open parent for five years, and it wore
me down. I knew my daughter’s heart. I knew she
was pure love and I also knew that she was suffering. And I
refused to let a lack of diagnosis allow her needs
to go unheard. Label me crazy, but respect my baby!

After five years of condescending professionals, know-
it-all parents and a generally unsupportive network of
people, my daughter finally got the diagnosis she
deserved: Asperger’s and Sensory Processing Disorder.

Wow! Finally! It fit perfectly! Sadly, I was excited that
she fits into a box. After all, that's how people communicate
and relate -- in boxes!

When the psychologist told me what the dx was, I said to
her, "Most parents are probably devastated when they
hear autism-spectrum-disorder. I’m not! I am thrilled!"

I am, sadly, thrilled. I explained to her that it wasn't that
I want her to have autism, it’s just that I'd put up with
years of having to deal with autism, but not having any
support -- because I couldn’t call it autism. I dealt with
years of being told it was my parenting, when, in fact, I am
an amazing Mother. I have been my daughter’s safe place in
this universe and all I ever wanted was for her needs
to be respected and accepted as valid.

Thankfully, the psychologist understood!

Well, two months after the diagnosis, I was reading
an article in Living Without magazine while having
dinner at a health food store. I turn to this article:
LOST AND FOUND: "Food as treatment for Autism
Spectrum Disorder. Changing a diet transforms a life."
I start to read, and out of nowhere, I start sobbing
uncontrollably. Holy crap! Where is this coming from?
It felt like the kind of cry that was going to get ugly quick …
I packed up my food and headed out to the car as fast as my
feet would take me. I couldn’t drive … I couldn’t see …
I couldn't stop crying.

What was wrong with me?

It was the article. No, it was what the story brought
up for me. It was everything about my five-year battle. And
at the core, it was about my loneliness in it. It was about the
extreme resistance I faced, the judgments, the criticism, the
money battles for treatments, the fear and angst of being the
only one who seemed to understand my daughter. The stress
of being solely responsible for researching and implementing
treatments. The sacrifices that went unacknowledged, the
pain and the hurts.

I realized I never got to grieve. I never got to indulge in a
little self-pity for the day-to-day struggles of dealing with a
child who was all-consuming … because, remember, before
the diagnosis, there was “nothing” wrong. If I didn’t like it,
people said, “I should just change my parenting.” It was the
fact that I, too, found my daughter, who had been lost. It
was because I, too, transformed her through diet. It was
about never hearing a sincere "thank you" or "nice job."

Realizing that I obviously needed that cry, I let it run its
course. When I felt composed again, I got back to the
article. I read this part -- “Together the parents resolved to
do everything in their power to 'bring Kaitlyn back'” --
and lost it again.

Then I further read about how
dad wasn’t initially on board with the diet, and called his
mother for help to deter his wife from using the diet. I read
how his mother told him to support his wife -- that his wife
had the best intentions for their daughter. I read how it
swayed him and how he got on board 100%.

They were in it together! It took his wife a mere week to
rally support from her husband, and her mother-in-law
helped her! Wow! I sat sobbing desperately again. It hit me
like a lead baseball bat: The reality that the diagnosis has
brought my daughter and I absolutely zero additional
support.

I am still in this alone. It is still going to be me against the
world.Now, instead of there being nothing wrong, it’s just
that everyone has an opinion on how I should be moving
forward from here … which, of course, doesn’t include me
having any credible say-so.Lovely, just lovely!

But, while all that brought me to my knees, the thing that
killed me, was that I never got to grieve my daughter’s
diagnosis.Oh my God, my daughter has ASPERGER'S!
I never got to grieve that my daughter has severe
theory-of-mind deficits and what that meant for her. Would
she ever be able to have a healthy relationship?
I was too consumed with the victory that would end my
long battle to get her seen, heard, and understood. I was
convinced that the lack of support came from the lack of
diagnosis. Wrong! I was angry that, because of what I'd
been through, I was relieved to have a diagnosis. It was
messed up, and I felt sick to my stomach.

I guess this was my little moment in time to grieve -- alone --
whether I was prepared for it or not! My quick little moment
in time to feel sorry for myself. My opportunity to unload
years of pent up emotions.My opportunity to pat myself on
the back for progress made. My opportunity to start the
healing process.

Through this experience, I learned that I can unknowingly
have deep grief, but that the grief has a mind of its own. And
it may come out, even if I’m in the middle of dinner. In
public.You may want to consider that before inviting me
over to eat.