The Climb.

In August 2012, we sit down for a consultation with the RDI group, Developing Minds.  I go in with a defensive posture, ready to march out the door if I even smell a hint of fault-finding or blame.  The last thing I need is to wear a yoke of shame for "causing" my son to have this disorder.  I have gone through the "what ifs" over and over in my mind, everything I did to prepare for his birth, all my life choices, and return over and over to God's absolute sovereignty. I choose to believe it is for God's good purpose and ultimate glory that my son has autism. Though the eyes of faith in a loving Father, it is for my son's ultimate good.  My feelings can get stepped on by my theology.  Just a few weeks ago I broke down in our consultation time, admitting, "Maybe he won't catch up.  Maybe it would be better if I just accepted that this is all there is. Maybe that would be more loving." I don't think that's true; I'm just saying that I don't know the future.

That's the life of faith: Hope in things unseen. And hope can feel cruel.  It hurts to see my child struggle, but it will be worth seeing him SOAR.  Jeremiah Christopher means "God will uplift" and "Christ bearer".  How appropriate and how like God to make his name like a promise to me.

This autism will not define my son.  It will inform his life, for a time very heavily, but it will not always. It will be redeemed-- however that looks to the eyes of society-- and I eagerly await what's in store.

What convinces me that RDI  is the correct treatment for us is their view of the deficits of autism.  Namely, the idea of dynamic and static intelligence.  Static intelligence is unchanging knowledge and patterns, such as mathematics.  This is one reason that individuals with autism often show an aptitude or even prodigy abilities in a very specific, limited field of study.  It is predictable, unchanging information.  Our Jeremiah does well with many academic tasks; he has a good memory and excels in numbers.

The tenets of RDI are that individuals with autism fail to use their parents as guides to understanding the world.  From birth, humans look to their parents to learn language, limits, social interaction, how-to-be.  Children are junior apprentices of their parents, naturally learning and taking advantage of challenging tasks that are presented in a developmentally appropriate fashion.  What RDI seeks to do is uncover this natural, intuitive learning process and repair it. Repair the learning process, strengthen the bond.  Not create it.  The bond is (my words) God given.

The first step is to establish what they term the guiding relationship.  Through intentional and mindful engagements, parents seek to take away performance demands (such as an over-emphasis in verbal language) and rely on facial expressions, wait time, and analysis of taped engagements to improve these times spent together.  Since children with autism have processing delays, the more language they are given, the more overloaded they become. The natural inclination a parent has when their child fails to perform or respond is to repeat the command.  It's a vicious cycle of information overload.

What seals the deal for me is the woman sitting in on the meeting. Her daughter is on the spectrum, and has seen so much progress that she is transitioning from a respected field to join this team.

What's neat is she becomes our consultant, the person I probably talk to more than almost anyone about our life. In essence, my professional autism mentor/therapist/cheerleader.  She sees my son.

We also start J doing speech therapy with this group, and get paired with a godsend of a therapist. Another person who understands and even enjoys my son-- as he is-- period. All the ladies treat him this way. They don't get flustered if he squeals, or runs away, or otherwise acts inappropriately.

What I am calling defiance, they are calling something else.

Autism. He is simply being.

And I couldn't see it.

RDI? Sold.

We begin.

**

We have been learning and working on RDI principles for almost 6 months, and it's been very challenging to reexamine our beliefs on parenting and to see another point of view. Since we suspected J had autism, I've been afraid that I've totally screwed up and that I'm just one of those people that screw up and I'll never get it right with my son.

One thing RDI seeks to do is help bring the parent-child dynamic to mutually beneficial relationship. Both give and take. What I mean by this is that J will one day be able (please, please Lord) to share his feelings and experiences with me in a way I understand because we will speak the same language--verbally and non-verbally. Right now, as Dr. Gutstein described it, our dynamic at times is like a blind captain trying to lead a deaf crew.

Lots of input, lots of energy, lots of frustration.

A lot has happened in the fifteen months since J's diagnosis: the mad dash for services, pregnancy and a new baby, the typical chaos of a two year old girl, and the general busyness of life.  When we started this program, our focus became laser-like: engaging Jeremiah and trying to see him in a new light.  This year of his life has been very hard.  I told one friend that it was as if all the deposits of loving moments between me and Jeremiah had been exhausted and my tank was empty.  Not much was going in, and I had no more reserves at that particular moment.

Holidays are always a challenge with young children, and especially for kids like Jeremiah.  The visitors and excitement and activity is wonderful, but when it's time to go back to routine in January, the piper must be paid.  For at least 6 weeks, my newborn slept like a rock and my 4 1/2 year old reverted to waking up two to three times a night-- coming to full alertness, ready to go.  Midnight, up.  Mom reassures at the door.  Between two and three, blabbing about whatever was last in his head and ready to be up.  This is where I must decide (if I'm even cognizant) if I will wait it out from outside his gated door as he S-C-R-E-A-M-S or go in, pull up the covers, and try to soothe him. Either option could take an hour.  These never-ending days just exhaust me, and as much as I know it's useless, I have to admit that sometimes I holler and spank and generally lose my mind after such a battle.  It really feels like warfare.  And it's hard to determine where his issues end and his defiance begins-- irregular sleep is part of the deal for many kids with autism.

And when your husband's cranky and you're cranky, and your kids are just being kids, and jobs need to be worked and appointments need to be kept and you're just trying to survive another day and not eat a whole gallon of ice cream, you start to despair for a time.

It felt like every single thing he did was to annoy me.  One day last week (after a low weekend), Jeremiah started making the "h" sound at me. Hhhhhh.  Hhhhhh.  He knows I hate this.  I've reinforced that this is an excellent way to get negative attention from me.  And in the moment, when I'm trying so hard to smile and pause and wait for him to attend my direction and choose to play with me, he hhhhhs.  And to my burnt-out ears and frazzled nerves, it feels like he is cursing me. I've cried more these last 30 days than I have the whole first year of his diagnosis.  Because it cannot be overlooked or wished away any longer.

About a month ago, we had a tough conversation with our consultant about our progress. Basically, we needed to change our perception of J's behaviors or we would stay stuck. In essence, we were the ones able to change.

This I'll never forget: "We can't expect him to come to us. We have to go to him."

That's the story of the Prodigal Son.

That's the story of the gospel.

He who was able came to those who were unable.

Let's just say I got the message.

And we started seeing the first small glimmers of success.

This week of Spring Break has been pure sunshine.  Your kind words, the prayers of friends, opening up, and Jeremiah's successive steps toward more and more connection have pulled up some roots of bitterness that I'd missed in my own efforts.  It's been healing.


Tomorrow... where we are now.

Meet Jeremiah

Let me start by saying:

THANK YOU.  

Releasing my story into the sometimes mean realm of social media left me both hopeful for unexpected connections and anxious, bracing myself for critical inquiries.  I received 100 percent of the former, which is a lesson in itself about expecting the best in others and pure grace.

I promised you more of our next steps, and I'm so eager to get there!  Tomorrow, we begin the forward march--RDI and the phenomenal support system we've found.  However, I can't neglect the star of this show for one more minute: Jeremiah!

Here's a get-to-know-you on all his favorites...

Cereal: Frosted Mini Wheats or Cinnamon Toast Crunch 

Beverage: Milk, milk, milk.  I'm kinda the milk Nazi... eat that (any fresh fruit or actual food product) or no milk for you!

Food: Berries, Bananas, Corn, Bread, Goldfish

Movie: The Chipmunk Trilogy.  Forever and ever, Amen.

Activites: Singing, Swinging outside, Taking a walk to "the rocks" in our neighborhood, going anywhere with Dad (namely CVS or donut runs), Monkey Joe's, playing "tickle hand" with Dad, pouring water/making chocolate milk, I-phone flashcards & games, getting picked up, crashed, or flown; bedtime prayers

Memories: Mickey's House, the Macon Children's museum, Zoo Atlanta

Quirks: (perserverations if we're getting techincal, but hey, my kid likes it, even though I may want to hide in the pantry and cover my ears after it's been repeated for the 100th time that day)

Closing doors and cabinets, ringing doorbells, throwing rocks (not at people!), spinning/manipulating anything that makes noise, crashing on his knees, chewing his fingers

Dislikes: All grooming except using his electric toothbrush, changes in routine

Accomplishments this school year: pushing himself on a skateboard 45 ft. in OT (when he start out at 0), making the down and across motion correctly with a crayon, correct pencil grip, saying hello and goodbye to his teachers (sometimes unprompted!), requesting to use the restroom (okay, only once so far, but this is HUGE-- and no accidents and in undies every day at school!), counting to 50, identifying shapes correctly, even ones I didn't know, like a rhombus, riding the bus successfully, walking up the stairs with proper gait, riding a tricycle-finally!, and most of all speaking more in sentences and engaging me in a give and take.

The flawless, 2 carat diamond soliatre (in an heirloom setting, naturally) of accomplishments:

Asking to play with Mommy and Daddy.  As if he could sense it, today he asked me to play a game, push him on the swings, make chocolate milk together and I added playing piggy bank and getting the mail.  I attribute this solely to the work we are doing in our engagements that I will talk in detail about tomorrow.

Until then, here's a true glimpse of the Jay Boy.

See why he lights up my world?

Want to help?  Go here and sign a petition to help bring about not just awareness, but action in getting specialized autism therapies covered by insurance, such as the RDI program that we are working so diligently on with J.  It is not covered by insurance.  And it is vital.

It's the Climb. Not just a Miley song... the content of tomorrow's post!  C'mon back!

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. 

Why?

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.

Happy.... March!

So.... Happy New Year, blog!  It's only March 6th! 

We've had our nose to the grindstone in 2013.  Between my last post in October and now, we've had some fun moments.

Here's a few:

Rachel's First Christmas

Kinda a blur.  Presents. Food. Copious behinds to wipe.



Our Quasi-Spontaneous First Trip to Disney



I read probably 1/4 of the 990 pages Unofficial Touring Guide, and stayed inside the park itself for a whopping 4 hours.  Lesson learned: Go to Mickey's House after a full day of rest from travel.  Trust me.  That said, we truly had a 'magical' time... a break from day-to-day stress and time to be in the moment.  We all loved it and I probably want to go back more than the kids.

Salty Sarah's Pirate Birthday

To make up for my Mommy guilt  her 2nd birthday, we had dinner with friends, cupcakes and a treasure hunt at school, and our grandparents over to celebrate.  3 years, 3 parties.  Sounds right to me.

Here's hoping I get back on here before June!



Caring Solutions Day of HOPE

What a great event! Our family walked in support of our local pregnancy center last Saturday at Central City Park in Macon. It was an absolutely perfect Fall morning-- brisk and refreshing. My team was in fine form, and most brought their husbands and kids. While most did the 5K, we strolled the park together and then let the kids play on the inflatables. It was special to me to bring our kids. It was my little way to symbolically thank the Lord for the blessing of Jeremiah, Sarah, and Rachel. $35,000 was raised to support the 2 centers' daily operations and the cost of the event was privately funded by corporate sponsors. I am proud to have contributed to this ministry! Again, Thank You to my family members and old, dear friends who were moved to give for this event. It will affect many families for good!