Sunday, March 31, 2013

I'm Ready.

I think.  My heart's racing just writing this, and I'm not going to hit "publish" for a few more weeks. 


Our son Jeremiah has a complex neurological disorder called autism Autism Speaks defines the disorder as being "characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors." I'd like to tell you a little about this disorder, and most important, about my son.

Jeremiah was diagnosed with autism on December 15, 2011.  He was 3 1/2 then, and is approaching his 5th birthday at the end of May.

Our son.  The first love of my mother's heart.

I'm writing this now because it's taken a year to really understand what autism is and how it affects both Jeremiah and our family.  My heart is so very vulnerable towards my children, obviously, and how they are perceived.  One thing I've learned is that I can't control that.  I can only control me.
Silence equates shame, and I am not ashamed.  Here's our story.

Jeremiah was always at the tail end of his developmental milestones.  He was sitting up, however wobbly, at 7 months.  Crawling at 10 months.  First steps at 15 months.  Walking steadily at 18 months.

He cooed, giggled, pointed, stacked blocks, ran to my arms, called us "mama" and "dada" and gained vocabulary like any other typically developing child.

At two and a half, though, I began to worry.  His teachers said he didn't always respond immediately to his name.  He would rather play with a little car at the window while all the other children sat at the table.  And his language never moved from two and three word phrases to conversational sentences.  He never had the explosion of language that I now see in Sarah, who just turned 3.  Around two and a half, her language just took off.  No one had to teach her.  Pretend, imaginative play bubbles out of her. 

Most of all, he began to exhibit odd behaviors, which I couldn't attribute to the tantrums and mercurial nature of traditional toddlerhood.  At his sister's first birthday, when Jeremiah was almost 3, he had an absolute screaming fit at the song "Happy Birthday".  This had never bothered him before.  And before that, at 18 months, Alex tells me now that he began to worry when Jeremiah had another hysterical fit.  We were taking him back home after spending a week with his grandparents.  It was as if he didn't remember us, or feel safe.  Looking back, these were the red flags.

At his 3 year old checkup, I could no longer say to myself, "He's a little boy.  Boys are always a bit slower to talk. He'll catch up."  He couldn't walk up and down stairs consistently with the proper gait, he didn't ride a tricycle, he couldn't perform 2 step commands consistently.  It was time to investigate.

Our doctor referred us to the public school system's "Child Find" program for children with developmental delays and special needs.  We also made an appointment at the Marcus Autism Center in Atlanta for an initial screening. 

The screening was in August and included an extensive parent survey and observation by a nurse practitioner.  She took a complete medical history, asked many questions, and saw enough symptoms to refer us up to the Neurodevelopmental Pediatrician.  We were playing in the big leagues now.

The nurse told us to start special ed. preschool immediately and to basically get over any preconceived notions about it.  Our child needed it, and that was that.

And it was.  Our first screening with Child Find was puzzling.  Though J showed deficits in most areas, they didn't deem him as in need as the children they worked with.  Church preschool was great for him they said. 

We didn't yet have the golden key of a diagnosis to knock down those doors.  I learned that real quick. Though I had sat in many an IEP meeting as a teacher, I didn't yet know the secret curriculum of special education. But I'm learning.

I would wring my hands for a few more months, and December finally came.  We saw the doctor the day before our family Christmas celebration.  Our doctor let us vent and ramble for about an hour, inserting a question here and there, taking copious notes, observing Jeremiah in her office, and then administering some tests through play.

Finally: "What we are dealing with here is autism."

My child.  December 15.  Life changed.

Jeremiah's official diagnosis is Global Developmental Delay, Autistic Disorder, with macrocephaly and a non-specific eating disorder thrown in to the mix. The "good news" is that J appears to be on the higher end of the spectrum; he was classified as "mild to moderate" which in itself has a huge range. And as the doctor put it, "He's higher... If that means anything." Translation: this is a big deal. So if that helps your ego, great. It's still autism."

We were pretty sure going in that indeed J was on the spectrum, but I'd been holding out hope for the PDD-NOS diagnosis: on the spectrum, but not classic autism.

To which I now just have to laugh at that mental security blanket we call denial.

And so, we break the news quietly to our immediate family and friends, and stubbornly, naively, but divinely decide that another child will still be in our future. Her name is Rachel.

Life's too short to be lived by what ifs.


Once we received the autism diagnosis, the first order of business was to begin therapies.  That called for applications, grant writing, IEP meetings, and lots of phone calls.  About 2 months into this new world, J was in a special education preschool program in the public school (Child Find) and taking speech both at school and privately.  We set-up OT to begin in the new school year, and so, when we went to our first follow-up appointment six months later, I was ready to report back on all our progress: funding! therapy! school!

The pleaser in me was preening.  A little therapy, I thought, and we'll knock this bad boy out in a year.  Autism to me meant limited speech.  Sure, he had some fine motor delays and some odd behaviors, but shoot, who doesn't?

The visit with the doctor was horrible.  And that's being kind.  Since the visit is in metro Atlanta, we drove and arrived at least an hour early.  Even though we knew better, we took Sarah because I wanted both parents to hear every word the doctor said.  I was still operating on the assumption that asking for help is an imposition. That's a big one to get over.  Sometimes you just need to ask for help.

After arriving an hour early, we waited another hour.  That's two hours for those keeping track.  Hitting nap time with a 2 and 4 year old.  In summer.   Ain't we got fun?

When we are finally called, the first step is to take basic height and weight.  Here's where things really go downhill.  One of the symptoms of autism for some individuals is sensitivity to touch and lack of understanding of social cues.  Haircuts, doctor's visits, any intrusive situation is ripe for a all-out, hysterical fit of terror.  My child simply does not understand that this will not hurt him.

For some reason, I submit to this, sheeplike, all the while wondering, "Uh, isn't this a center for autism?  Haven't they seen this before?  Surely this isn't new?  Why are we doing things this way?"  (I stood up for myself and J and did the physical at the end of the visit for our latest check-up, and lo, it worked.)

All part of the learning curve.  By the time we get to the doctor's office, J is just spent.  Done.  Alex walks him around with Sarah. The doctor gets to make no assessment of his abilities other than he's non-compliant (and totally stretched beyond his limits in my view after this absurd wait), and after I make my oh-so-impressive presentation of all we've done, she lowers the boom.

There's more.  Lots more to do.  We have not yet begun to fight this thing.

Behavioral training, or ABA (Applied Behavioral Analysis) is a must.  More time at school.  Need to get known by the big wigs at the state level who deal with teaching children with autism in the public schools.  Do these things and good luck.

When I start to cry, she kindly gives me a pep talk.  Truly, we probably had to wait so long because I'd bet she does this repeatedly all day--pick up defeated parents after sharing the cold, hard truth.  Here's the facts,  here's what to do, give it to you straight.  And that's what we're paying her for.  She's an expert in the field, and she's not here to make us feel better.  But she is very kind and does see potential in our son.

 I've known all along that ABA is the standard of care for those on the autism spectrum.  However, there are precious few practitioners of this in my area.  And as much as I'd love to move across the street from the Marcus Center,  I have a husband, daughter, and baby on the way that deserve to have me fully present.  Our son *cannot* be the center of our family.  It's not best for him or for us.

I get recommended to a group called Developing Minds.  They use the RDI (Relationship Development Intervention)  method to work with families and individuals with autism. (Notice how I don't use the word "autistic"?  That's cause I don't like it. Kid first, diagnosis second. Always. Amen.)

I am very skeptical about this approach because I received a recommendation from his speech therapist who says this program helps "repair the broken parent-child relationship." Say what?

Like, not only does my child have these deficits, you're telling me that we don't even have a bond?  'Cause sister, THAT'S ALL I GOT.  The one thing I always clung to was our bond--and still do.  J has always received affection and given hugs and I never felt that it was done in a passive way.  That's probably one reason I didn't see the autism signs for so long.

I cry, talk to J's teacher, and dismiss this recommendation.  What does some fresh-faced, college kid know? And isn't a mother?  Really, this got me the most of all.  The autism I can fight.  But if you're telling me my kid and I aren't bonded, that the Lord didn't instill that in us both, then I. Am. Lost.

Our doctor endorses RDI, so after our visit, I swallow my pride, and call the number for Developing Minds a few months later.  I'll hear them out.  This 'thing' is real, and it's not going away on its own.


If you've made it to the end, thank you so much for reading.  As I said at the beginning, this was very hard to share because it's about my precious son.  And my dreams and wishes and hopes for him really haven't changed.  Knowing and loving God, knowing and loving us, friendships, a place in the world... those come first.  Everything else I'm opening up my closed hand and surrendering.  Each step will be hard fought and God accomplished.  I have no expectations, and complete faith, all at once.

Each parent must make the best choice for their child and construct their own point-of-view and plan on how best way to raise them. There is so much in the news about autism, and lots of debate in the autism community about its possible causes and how best to treat it.  I very humbly ask that if you care to share a thought with me, please do so from a place of respect and kindness.  I do not wish to engage in the finger pointing that I see all over social media in regards to autism.   It hurts me deeply.   If you have an encouraging word or story to share, I'd love to hear it. Please message me privately here if you'd like to go in-depth or perhaps have questions about our particular circumstance.  I'd LOVE to share what we have learned so far.

Thank you so much for reading and for caring. Come back to the blog each day this week to learn more about our next steps and meet Jeremiah.  He's worth knowing.

This is a boy who loves.

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