Sunday, May 3, 2015

Autism Is Not the Common Cold and Other Things I Know For Sure

"Autism is not the common cold,"  I said to a group of family members gathered around a cozy living room after a delicious meal.  I had never thought about it that way before, but the phrase has been rolling around in my head for the last several weeks.

We had not seen my husband's brother and girlfriend in several months and they inquired about Jeremiah and his progress, and I, in typical fashion, I had a lot to say.  I can't remember the specifics now, but I shared his interests and his victories and how he amazes me every day.  How I can't believe how much he's grown since his diagnosis three years ago.

Here's the thing that got me thinking:  we discussed Jeremiah's potential in his future, and how far the doctors and I thought he could go.

My answer?  I walk the line of hope and reality.

I know that, based on where J is "at" developmentally at age (almost) 7,  I should assume an alternative diploma track and vocational training will be the most appropriate path for him.

And then again, I think: HE'S NOT EVEN SEVEN.  Let today be today, and appreciate its gifts.

Autism is not linear, and neither is the growth of the individuals affected by it.  Like many on this path, we enter in thinking we can boil it down to a formula.  Take these prescribed therapies and those preferred intervention strategies and volia, off the spectrum!  Even for the most "high functioning" individuals on the spectrum, who "pass" as typically developing in society, it's just not that simple.

And as a mama, I want to make it easy to understand for those involved in our lives.  Spin our own narrative.  "We are kicking autism's butt and taking names!" Rah, rah, rah!

It's just not that simple.

And I'm starting to appreciate it.

We started at point A: diagnosis.  We went to point B: early intervention.  We arrived at C: pulling out of B and homeschooling to focus on relationship building.  We moved to D: re-entry of traditional school to enter a self-contained autism class, which we would have never entertained and dreaded just a few years ago.

Now, point E: informed advocacy.  After a year of re-entry,  we find ourselves at the end of an academic year and are taking stock.  J has benefited from the routine of the classroom and the multiple interactions with teachers and adults.  His teacher is a DREAM, an angel among us.  I would blather on and on about her, but she's awesome.  So gifted.  You know she loves those students and advocates for them and teaches the other faculty about their potential.  J will most likely be in her class again next year as she teaches two grade levels and we're pleased.

But we don't stop trying, reaching, searching for what's the very best for our son and how that affects the whole family.  I'm actually walking into an IEP meeting next week informed and prepared.  I have sat down and carefully analyzed my concerns and shared them with the team. I have requested several stakeholders present at the meeting.  Not because I'm displeased or hostile.  Not at all.  That was a risk for me.  Everyone has been so accommodating that I didn't want to rock the boat or raise a stink.  Hello, I'm a peacemaker. And a woman. And a southern one at that.

But it's my right and my duty.  I'm my child's best advocate, and I want to make him his best advocate as he grows.

Our little family was out to dinner a few weeks ago, and I was sharing with my husband about all that I had been researching and learning about IEPs and educational opportunities in the future for J.    I patted myself on the back for taking small steps of bravery: making calls, asking questions.  I expressed fear over those things not being well received.  I worried about challenging the status quo.

My husband's answer? The reply that made me tell him, "And THAT'S why I married you.  That right there."?

That's what we do.  We. Us.  Our family.

We do whatever it takes for our children.  Whatever we can do.  We do it.

We are, as the great character Atticus Finch told his daughter Scout, common folk.  We follow the rules, tow the line.  We live in an average (a very beautiful and more than enough, but ordinary in terms of American socioeconomics) home and neighborhood.  We drive well-broken-in-vehicles.  Our children wear only the finest play-clothes from Target, and the girls and I have come to appreciate the thrill of the hunt at Goodwill. We are educated, but not pedigreed.  We are not "special" and do not view our children as "precious snowflakes" that are better than any other child.

It's not what we have. It's who we are.

These children are ours, and as such, we will do everything in our power to secure for them the most appropriate and beneficial methods to aid in their development.

We don't know exactly what that looks like, but we are committed to searching it out.

Even as we know there is no one answer, no magic pill.

The searching, the banding together, the being-a-family is.

Autism is not the common cold.  It is not linear.  Nothing is.

And that, despite the hard times, is the beauty of it all.


krisking said...

This is very well said and will be encouraging to others. Thank you for sharing your journey. It's a road on which many travel.

Malo Kasese-Ngandwe said...

I am so behind on your blog posts Melissa but so happy I chose this one to start catching up. I love it. I appreciated that we are friends who stay in touch on the phone but nothing beats knowing what your friend is really going through and thinking than a well thought out, well written entry. Inspiring!

Jolene Philo said...

Thank you for emphasizing the importance of continual, persistent advocacy for kids with special needs. And thanks for adding this link to's Tuesday link up.

Jaybird said...

Thank you, Kris!