Wednesday, April 3, 2013

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.

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