Blah! I'm in a Glass Cage of Emotion!

(In a good way.)

Y'all.  First, thank you.  Your kind words and "I enjoyed this" are more than diamonds or gold.  Words are my love language (shocker) and I'm all filled up.

Next,  The BIG DEAL IEP MEETING.  It was so good!  I was not rushed, talked over, or made to feel anything less than an equal member of that group.  Each person was well informed about J and had lots to say and add.  I think the Assistive Technology person and I are well on our way to becoming besties, and I'm sure that'll be fine with her when I tell her. (I'm not a weirdo. No, really.)

It was so empowering to bring to bear all that we've learned through our experiences and exposures, all our successes and failures to speak intelligently for our son.  Not only were all my concerns addressed, we wrote even better, more applicable goals. Bottom line--reading and math? Yes, I want those things.  But we want Jeremiah to have his own voice in every sense of the word.  Making his needs and wants known, standing up for himself.  And as I told Alex leaving that meeting, "I knew we needed to be doing this (implementing the LAMP program at home).  I just needed a professional to tell me."

I have been learning over and over this year about God's providence through studies of Ruth and Esther and I see it so clearly right now.  Sometimes the bad and the hard and the never-wanna-go-there-again is the very thing that leads us to our--big thing here-- destiny.  My teaching background seemed useless and out of place with a child that has trouble communicating in a way that I understand. How can I share a love of knowledge with a child who couldn't even tell me he loves me? (He can now.)  I want to share all those things with Jeremiah, and I plan to, even if it looks differently than the way I imagined.  My love of language, of knowledge, of seeking to understand and be understood?  God flipped that script and made me a champion for one amazing boy and two firecracker girls.  He's good like that.

We have been retrained to communicate with Jeremiah and now, can find a middle ground with him, to teach him in a way that matters to him.  We are still very new to this path and have a long way to go, but keep on, little steam engine.  You'll get there.

So anyway, we go in the meeting, wired and fired, prepared and prayed, and our teacher shares with us, a bit shakily, that she is being transferred to another school.  It's fresh to her, and I don't want to pry, but for a moment I think, "This all was predicated on you being his teacher! Now what? It is all for naught!" *puts hand to brow, sighing with urgency*

But as the meeting went on and plans were made, I could admit to myself: Change is good.  Life is always changing, and that's one of the things we need to expose him to-- how to adapt to change.  He's taken to new teachers quickly before, and I know he will again.

Again, God's good like that.  I could easily make J's teacher the bar with which I judge all other teachers.  I have to depend on Him and be open to the new people he brings into our lives.  And she will still be in J's life through Sunday School. You see? Providence.

Thus concludes today's lesson.  Come back tomorrow where I will exegete Revelation. You don't want to miss it.

(Insert sarcasm here.)

I'll end with a link to my Sonshine Singers choir, featuring my own Sarah.  I could list a 100, but this is one of the reasons I love the Church.  A little child will lead them, and these little ones sure did just that Sunday night.

To Me, 3 Years Ago

This post is inspired by The Mighty, that asked:

"For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself?"

I've touched on this idea a bit here in my grand coming out blog party.  I'm a year and a half further along from that post, and here's what I'd say a few more steps down the road.

If I could go back to December 17, 2011, I would want to make myself sit down with someone, a professional or trusted figure, and just let out the complex feelings I tried to put a resolute demeanor over.  We were not surprised to receive an autism diagnosis for our 3 1/2 year old son: we were relieved to have an answer.  It was a new starting point.  What I dreaded most was to see my son diminished in the eyes of others.  I would not stand for that.  A day later we went to a family Christmas gathering where I tearfully declared, "Our dreams and wishes for our son are unchanged." In the essentials of life: love and faith and family, nothing had changed.  Jeremiah had not changed.

We were the ones who would, by almost imperceptible degrees, change. 

We would change our terminology.  From the "welcome-to-the-club" first-person terminology of an individual with autism to the term many self-advocates on the spectrum have taken back: autistic. An educator recently reminded a group of parents at a seminar I attended that the proper term was individual with autism as if we were unfamiliar with the nuances of terminology and the debates thereof.  Bless her.  Self, you'll learn to let these things roll off your back. 

We would change our stance.  When you typically begin to walk down an unfamiliar road of diagnosis, you join a new subculture.  To broadly define the two options of the ASD spectrum, you have 1) Change and Cure and 2) Accept and Support.  Of course these are simplistic categories, but we started unabashedly in the first category.  We began therapies (a good thing) and schooling (another) and paperwork and lastly, an approach to autism intervention.  I regret none of these.  We learned more about our son's unique style of learning and worked through our own prejudices and barriers to parenting a child who approached the world in a way in which we were unfamiliar.  Then, after a few years, we stopped and re-evaluated.  This is the most important step, I believe, to helping your child.  We gave ourselves permission to keep the good and abandon what was not working for our family.  No philosophy or therapeutic approach is more important than the health of the entire family.  We were tired.  We had reached an end of one approach and it was okay.

It's good to go your own way.  This is truly one of the best lessons I've learned from being a parent of a child with a disability.  Doctors and professionals are valuable resources, and it is wise to examine the course of options they present.  But you know your child and yourself best.  Trust your instincts and judgement.  You are the parent.  You do know best.  You are the most vested.  Examine everything, make a choice, and walk boldly in it.  Fear is a terrible motivator.

We would laugh with our son.  With his sly methods of getting his way.  His way of showing excitement-- to rehearse over and over the next time he would see someone or someplace he loved. We would hoot and holler as he took ownership of toileting, a very big deal for any child. I would hear my first "I love you" from my son, as he approached my door after bedtime, knowing this would most definitely get him time in my room.  And his new found interest in drawing, not to mention riding his first big bike and loving it.  Being undaunted by the falls.  Slow and steady wins the race.

We continue to learn that the best place for our son to be is the place where he will thrive.  Right now, that is in a special education classroom.  He has excellent teachers who understand his needs.  He is not lost.  He would be lost in regular classroom, though I dream one day this will be possible.  My son has teachers that see him and value him.  That's more than enough.

We have a son that makes us laugh, cry, roll our eyes, and cheer.  Sometimes I lose my patience and remind him to "cool it, buddy" when he's asked to see Papa for the 10th time that minute.  I can discipline in haste.

But I love and appreciate my world and the wonder of life more that I ever would have before.

Sweetheart, it's gonna be more than alright.

Love,

Me

April Is The Cruellest Month

I didn't write any autism posts in the month of April.  At least on this blog.  In my head?  Many.  Working titles include "You're a Grand Old Flag" for my son's great enthusiasm of our nation's symbol, very much tongue-in-cheek;  "State of the Union: Our Second Year With Autism" and "Autism Junction, What's Your Function?" on functioning labels, such as high or low functioning autism and my ambivalent feelings about them.

I may go back and write those posts because belieeeeve me, I've got lots of words to work through.

What I want to share about our particular experience down this road is summed up beautifully by Jim Walter of  Just A Lil Blog in his post Love for NT Parents  (parents of neurotypical children):

"I'll probably realize I'm wrong at some point, but I feel like I've reached a really good place with Lily.  I feel like I accept her completely.  But before I got where I am with Lily today I wondered how to accept autism.  Before I wondered how to accept autism I wondered how best to spread awareness.  Before I wondered how to spread awareness I wondered what had caused it.  Before I wondered what caused it I wondered whether I shouldn't have vaccinated.  Before I wondered about vaccines I wondered about cures.  Before I wondered about cures I didn't have an autistic child.  Each new thing I 'learned' either built upon the last, or completely razed it to the ground and rebuilt it from scratch.  I was totally adrift and I needed to understand.  Needed to because my daughter was autistic.  No other reason."


This the paradigm through which I am working.  This year has been spent wading through the incessant causation theories (though a new one will slap me upside the face from time to time) and taking another view of autism by listening to autistic voices.

The very word autistic really tripped me up.  It felt like an insult.  A lesser-than, thinly veiled synonym for the "R" word.  I would hear it and assume the speaker had narrowed my child's existence to his scores on the DSM IV: Difficulty with social interaction. With communication.  Repetitive behaviors and obsessions.

But I read something that shed some light on what was really bothering me.  The word autistic simply reflected back my own fears about my child: that he would been seen as something other. And on some selfish level, that would reflect poorly on me.

I wish I could find the exact quote that started this shift for me, but an autistic adult, as the writer self-identified, used the example of a child's superhero toy.  The toy comes WITH special additional features! Removable cape!  Anti-gravity belt!  The writer pointed out that the person-first terminology  "individual with autism" makes it sound as if the autism is separate from the individual, something to be picked up and put down again as needed.  And if you've read my earlier thoughts, you know I agreed with that wholeheartedly.

But the thing is autism isn't an accessory.  It cannot be taken off.  It's a way of seeing the world.  A way of being.  A very human way of being and thinking.  A different way, granted.  A challenging way of being to understand as an outsider.  But not other.  Not less than.

And I began to be okay with it.

I can use the term to describe my son.  In brief interactions in public with new people, it can be helpful.  To the waitress who is trying to win J over with charm and questions, who turns out to be a parapro in an autism classroom when I share his autism superpower.  Life can be cool like that sometimes.

I always use "on the spectrum" or ASD or "with autism" with discussing the topic with other parents like us, but I've made my peace with autistic.  Baby steps.

I've suffered some autism burnout, perfectly explained in Bec Oakley's stellar resource, Snagglebox.  Most nights I've come to bed with a new theory or treatment to fret over as Alex listens, sometimes chuckling that "Babe, you worry too much." Still other times holding me, like he did on my birthday after our date night.  The dinner that I have to excuse myself to the bathroom to pull it together. Back at home on the couch as I just sob from trying to play god while simultaneously worshipping at the altar of AUTISM, a mysterious entity that consumes my thoughts and emotions.

Autism is a terrible god.  Anything other than God is a terrible god.  I very clearly got the message that the place of highest affection in my life was solving autism for J.

So this year, after the big April autism awareness and acceptance push has ended and other worthy causes take its place, I still work toward the goal of  fully accepting my kid, just as he is.

Spoiler alert: He's a great kid and we've done big things together.  In more ways than one, we've made it to May.

"APRIL is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring
Dull roots with spring rain." T.S. Eliot, The Waste Land

Toddler Fashion Throwback

 Rachel, September 2013, 12 months.

Sarah, January 2011, 12 months.

I sincerely believe part of my life's purpose is having a little girl to dress.  Having sisters and seeing formerly loved preciousness on another child delights me.  I'm already giddy at the thought of putting Rachel in Sarah's Christmas outfit.  If only I could exert this mental energy on other productive tasks.  Like budgets.  Or flossing.

We went on our first field trip with a group of homeschooling friends.   Our last visit was when J was almost 2 and Sarah a few months old.  

Since I'm on a roll, here's something that lays me out in awe and gratitude.

Three 1st birthdays

I'll close now before I start chasing down "coming home in the baby seat" and ultrasound pics to compare.  You know I would in a New York minute.  Til next time ;)

Parallel

One day until August 1st.  The beginning of the school year, and the "end" of official summer, even if it's 90 degrees until late September here in Georgia.

August 1st has been the line in the sand.  The straddled fence.  The trigger to pull.

And we are stepping over, picking a side, starting the race.

We are homeschooling. Teaching at home. Private school (for one).

Yes.  Us.   Special Needs and all.  A minority in the minority.

And yes.  I'm prepared to be pigeonholed  as a religious nut, a motherly martyr, or at least someone lacking in good sense.

I've held all kinds of ignorant assumptions about all manner of things, homeschooling included.  I get it.

But here we are.

I wasn't going to share this so publicly so soon, but the true reasons we have chosen to step back from traditional schooling for the present time cut through all the sides and stereotypes.

I have to know my son's heart.  I just have to.

As the days, weeks, and months pass by, we are moving by each other.  We are parallel.  Close in proximity.  So far from intersecting.

All my ugliness, my frustration, my selfishness, my need to be right-- it all comes bubbling up facing the big, bad autism beast.  My head understands, but my heart is so stubborn.

Even so, there's just enough of a whisper, a gentle assurance that this is the path.

It's falling into place.

We begin Monday.  Bit by bit.  Minute by minute.  I'm gonna to choose to love my son.  As Christ does.  That's my aim.  More than reading, math, life skills, therapy, anything.

Intersection.

I think that's enough to qualify me as his teacher.

The End of The Beginning

Today is April 30th, the last day of Autism Awareness Month.  It's the end of my beginning.

It's allowed my to talk openly about my life-- all of it.  Because when I can't talk about one thing in my life, I can't talk about anything.  My boy is very much my life.

Fittingly, we had our placement meeting today and it went very well.  I went in with the attitude that the teachers and administrators were there to help me, not to keep the best from me or my child.  That was the best advice I got early on.  Be informed, be an advocate, but be part of the team.  I have more to share about the meeting, but I've got to let in all sink in first.  We will be at the school I'd anticipated, but I got a good feel for the teacher and the classroom.  I've excited, energized, and hopeful for the future.  I felt heard and understood in the meeting, and yup, I cried a bit, but that's just me.  As I told the team, the onus of Jeremiah's potential is on me (well, on God through me, but you know, we only had an hour).  I never thought I'd be sitting in a special education meeting for my child. Ever.  But here I am, and that's okay.  Whatever it takes.  Wherever the path leads me.

I know.  Jeremiah's future is going to be amazing.

I've been thinking about awareness and acceptance and what that means.  And how it allows us to love our neighbor.  Some in the autism community feel like a blue bracelet or light isn't going to help their child.  And on face value, it won't.  But prayers will.  And understanding will.  And friendship will. And monies raised in scholarships will.  And research will.  And humility and gratefulness will.

Sure, I'm aware of autism.  As one blogger said, if I were any more aware of it, I'd be dead.

This month and this series of blogs has been about me accepting it.  And in turn, I have accepted so much more.

I've accepted love. New direction. New dreams. Hope. Laughter.

I know what autism means to me, and the outlook is not what my doctor said, or the textbooks outline, or what the educational prognosis might say.  It's a hands-on, first hand account of God's power molding my son day by day.

Thank you for loving me as yourself.  Thanks for being my neighbor.

James 2:7-8 (NIV)  If you really keep the royal law found in Scripture, "Love your neighbor as yourself," you are doing right.

Standing in the Need

Some really cool stuff is happening in my life!  I feel like some tangible blessings have fallen in my lap, not because I asked for them, but because the Lord just delighting in me.  I hope that doesn't sound 'braggy', but I'm feeling very loved by God!  He's opening my eyes more to how he is working, probably because I just need Him.  I need divine power, insight, direction, strength, everything.

With all this in mind, I'm gonna go ahead and ask for a few things of Him, and a couple I'd like to share with you.  I've had the privilege of asking others to pray with me about Jeremiah and our family, and in turn, felt the need to pray for those encouragers in kind.

So, would you pray for me?

April 30th is J's placement meeting for schooling next year.  It should be a relatively low-key meeting.  His teacher already told me the school she is recommending and the best fit in terms of a teacher.  Our local school does not have Special Ed. Kindergarten, so J will be going to another school.  Though it's a bit of a bummer to not be at the local school, the options are excellent and our county has high marks for their elementary schools.  Would you pray that:

• We select the best school for Jeremiah.
•  His teacher will have a true understanding of autism, and a passion for teaching.
• For our summer, that I will use the time to "bank" many enriching engagements with Jeremiah.
• Perhaps, down the road, as we gain confidence with our RDI program and the progress we are seeing, that I could even step in and take over J's schooling for a time to accelerate him. This is a new dream that scares and excites me, but I know NO ONE will be as committed as me to see my son grow. I would never have thought it possible or even wanted to do this but for J's needs.  I still have lots to think about, and surely don't want to do something to satisfy my own need for praise or approval.  And I don't want to not do it because I'm worried what others might think. I want to do what the Lord wants, what's best for J, what's best for the family and I pray all those things line up!
• I will make and cherish special times with Sarah and Rachel separately and together.
• I will just lap up every sweet moment with Rachel and not worry a bit about her development. She's in that "life rocks!" phase of excitement and I'm like "she's waving her arms in the bouncer... is that a stim or just happiness?"  I don't want to miss anything or filter a moment through worry.

Could I pray for you?  I will, too.  Email me or if we're buds, text me.  Let's go all in.  I've been studing the book of James on and off for a while now, and it's just hitting everything in my life-- words, trials, what loving others means, prayer, healing.  It's hits 'em all.  So let's pray, "for the effective, fervent prayer of a righteous man avails much" (James 5:16 NKJV).  Or even better: "The prayer of a person living right with God is something powerful to be reckoned with" (The Message)

To be reckoned by God--astounding!

Resources and Advice

It's been quite a week!  I doff my hat (or twirl the belt of my pink, fuzzy robe more like) to professional writers who do this daily.  It's so rewarding to hear feedback and make connections, but it's also mentally and emotionally draining to dig deep.  I need to finish up so I can watch The Office and eat Reese's peanut butter eggs.

A few friends have reached out and shared that they will be passing along my story to help a friend or family member facing a possible autism diagnosis.  If that happens to be you, It's gonna be okay.  Really.  I know even reading this story or resources about autism can just twist you into knots.  You're reading about possible therapies, diets, bio-medical approaches, and well, some stuff that just seems far out.  And you are willing to try anything, everything, all at once. It's gonna be okay.  I feel that way too, then I talk it out, and I'm okay for awhile, and then some article or firestorm in the autism community will get me all worked up again.  The sad thing is that many parents with kids like ours are very, very hurt and angry.  And they channel that anger to fight for what they think is best for their children--which I get.  But anger will slowly rob you of joy.  When you find yourself feeling angry or confused, don't go to the Internet!  It will not make you feel better.  Talk to your spouse, make a lunch date with a friend, go do something that makes you happy.

Above all, follow your gut and get your child screened.  Autism screening can be done as early as 18 months. It will not hurt to be cautious.  If your primary pediatrician does not take your concerns seriously or takes a "wait and see" approach, get a second opinion.  It often takes several months to get in with a specialist, so don't wait.

I waited for Jeremiah to "catch up".  When he was 2 1/2, I filled out a screening device myself and hemmed and hawed over it.  I was not an expert.  I only had one child as a frame of reference.  If you are researching autism in concern about your child, call the doctor tomorrow.  I know it is so hard to even admit you are worried, but take it a step at a time.

If you are newly diagnosed, prioritize your next steps.  You cannot get a plan in place in a week.  For us, it was schooling, funding/insurance issues, speech and occupational therapy, then finding an specialized therapy for autism.  At age 3, we were referred to a developmental pediatrician and from that appointment to our diagnosis was 6 months.  From diagnosis to a fully realized plan took 9 more months.  You will get to a place where you feel like you've regain a measure of control.  Be kind to yourself and your spouse.  Let others be kind to you.  They are not judging you or being fake.  If they are offering help, they are good folk and really care.

If you are a family member or friend of a family like ours, I'd like you to know that we see ourselves just like you see yourself. We are just a family.  We have special needs, true.  Our child has special needs.  Words like normal sound pejorative to our ears.  Neurotypical or typical is how we refer to our children that do not have a particular diagnosis.  But they are all our kids.  Period, The End. Don't get hung up on labels.  Everyone's situation is their normal.  We all just want to belong.

When we talk together, please ask out our child with special needs.  Just how they're doing. We love to talk about them.  We don't get to talk about them as much as we'd like with our friends because we often don't have much to contribute to the discussion when our child is not at the same place developmentally as their peers.  So please ask when it's appropriate.  And then other times, we need a break. We desperately need to talk about mindless enriching programs such as The Bachelor or our muffin top and how best to conceal it.

Before I close, I want to mention my wonderful husband, Alex, and our amazing family, especially our parents-- Nana & Papa, Grandma & Grandpa to Jay.  I wrote this for me, but I mainly wrote this for them.  This is everything I wanted to explain and didn't know how.  Thanks for being patient. Thanks for loving Jeremiah and never, ever acting like he was in any way less than the blessing he was when he came to us on May 29th.

I knew I was totally ruined in love for that little boy the moment I felt a silkiness run down my arm as I had him on my shoulder in the hospital room.  I was expecting to see spit-up. Instead, I saw little hand had fallen and found a resting spot.  That's the image I'm gonna remember when he and I are out-of-sorts.  And that little toddler trying to feed me yogurt.  The little boy carrying his own diapers in a tiny backpack to baby preschool.  A big boy riding the bus, always ready for Chick-Fil-A and the next outing.  It's the same little boy.  And autism has nothing to do with it.  Raising him and our daughters is the privilege of our lives.

He's just our boy.

Faith based web resources:
Chosen Families (Hidden Disabilities)
Not-Alone (Special Needs Parenting)

Blogs: While very diverse in their viewpoints,  all are respectful and encouraging
Autism Wonderland (Mom with elementary aged son with autism)
Flappiness Is (Mom with preschool aged son with autism)
Mostly True Stuff (Funny blog; Mom with a son with autism and daughter with Down's Syndrome)
Laura Shumaker (Journalist and mom with adult son on the spectrum; real and optimistic)

Singing Through the Rain (Faith Based blog; Mom with preschool aged son with autism )

Books I Recommend:
Ten Things Every Child With Autism Wish You Knew by Eileen Notbohm (Autism mom)
Finding Your Child's Way on the Autism Spectrum by Dr. Laura Hendrickson (Faith based; Autism mom and psychologist)
The RDI Book: Forging New Pathways for Autism, Asperger's and PDD with the Relationship Develoment Intervention Program by Dr. Steven Gutstein

Middle Georgia Resources:
Developing Minds
Central Georgia Autism, LTD.
Marcus Autism Center (Atlanta)

Now.

Here we are. Inching up on J's 5th birthday. The number I've been quietly dreading.  And while I am so grateful to have him turn another year older, it's a milestone, and the expectations of a milestone hurt.

 Few facts from hours logged in a College of Ed. lecture hall stand out for me.  One is that birth to five is the greatest language learning stage of life.  Those first five years are the much referenced "window" of early intervention.  Before RDI, I felt five coming down on us much like a guillotine. When the calendar turns to late May, that was it.  Window closed.

Guess what: The brain can do amazing things!  It can be trained to work in new ways.  New neural pathways can be formed.  Five really isn't the "developmental death sentence" I'd feared.

Five years old: Kindergarden looms large. Superhero underpants and capes, tents out back, yucky girls, and a long list of childhood accomplishments.

For us, five doesn't look that way. In my honest, unfiltered moments, I mourn those magic moments of early boyhood that we all missed. Our years were sweet and wonderful. They were just different. And I'd be lying if I said it didn't hurt or didn't matter.

Whew. Thanks for letting me say that. This "acceptance" thing don't come easy.

I envy the mothers whose only worry for the next school year is what teacher they'll get. And only paperwork is the postcard in the mail.

And those that can plan such whimsical activities and unique opportunities without carefully made contingency plans.

We have fun-- trips, adventures, surprises. It's just never seemingly effortless. I know... Nothing ever is.

This year, however we celebrate, it will be about us. About THIS five year old boy and what he'd enjoy. Not what never was, not what might be, but this moment. Now.

I love my son-- now. Just as he is. Now. Even when I don't feel it. I love him.
No matter how he performs.

I'm taking a crash course in unconditional love. And one day, I'll ask him to forgive where I just totally screwed up.

Even though I know I already am forgiven.

That's God's love.

*

One more "All About Jay" day... Tomorrow, I'll be discussing what I would go back and tell myself if I could and how you can encourage a family like ours dealing with a hidden disability such as autism.

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.

Just In Time...

I've started a tradition of making birthday slideshows, but I've fallen behind this year!  I realized making this that most of my action snapshots are saved to my phone! 

Here's a little bit of Jeremiah's 4th year.  I always find a song that Jay and I dance to a dinner making time.  Never thought a Queen song would remind me of my little boy.

Seriously, four years ago today I held that boy for the first time and understood the tender affection and consuming love that God feels for me.  What a gift these years have been!  I am so thankful for them and pray for a lifetime of memories made with my family.