Let's Go Bring Back Summer!

Every honest mom's two thoughts on Memorial Day Weekend:

1. Yay!  It's summer! 

2. (Crushing terror) It's summer!

We are two weeks into summer break here and I've definitely felt the polar ends of summer elation and terror.  We started off with a bang, a no-TV day.  All day.  For some, this is a no-brainer, but for us, it was a bit unprecedented.  8-10 a.m. is usually Care Bear/Little Pony/Chipmunk time as I get the kids feed and then the kitchen cleaned up. I can't remember the specifics of why I hid all the remotes (though bad attitudes and generally brain-dead children must have been a factor), I was surprised at how easy the day went and the improvement in attitude of my older daughter.  I've never kept to a strict "screen time" schedule, but I have weaned a certain 5-year-old girl off having "mommy's phone" in her room just so that Mommy can have 45 minutes of sanity.  In a move of sheer genius, I pulled the dusty CD player into her room to play books on CD.  GENIUS MOVE.  I highly recommend it.  Sarah is not reading yet, but she can follow along with the "ding" of the CD... major nostalgia, too, for us kids of the 80s and 90s.  I remember reading a Rumpelstiltskin reader on cassette.  And you can check out kids' books on CD at the library.  A little less TV equals a bit more ingenuity for everyone.

We've been taking swim lessons as I've mentioned previously, and it has been such a treat to see the girls become competent in the water.  They both push themselves each time we swim recreationally, and both have requested to venture into the deep end with Mom.  That pushes me out of my comfort zone as well, but it's a new feeling to see your children become self-sufficient in an area beyond going to the bathroom.  Like they can do things.  I feel like we are coming into our own as a family, and that's just the best.  Jeremiah has also begun to take lessons and his teacher and his response to her as been nothing short of beautiful.  I was understandably concerned that he would not take to the tough love approach of swim lessons, but his teacher has far exceeded my expectations for him with constant praise and several tricks-up-her-sleeve to increase his comfort and trust with her.  We've got him placing his chin in the water and wading out past where he can touch by "Spiderman-ing" on the wall with his hands.  It's awesome.  The pace may be slow, but from a total refusal to get in the water last year to wanting to do what his sisters are doing-- ACES.

For J's birthday last week, we had a family pool party and it was maybe his best yet.  We had a picnic poolside and the grandparents got in and swam.  There was plenty of shade for the non-swimmers, and everyone was happy.  There aren't many times you can say that in a group, and it was special.
Also, see this boy's face?  It's everything to me.

Happy boy.  Priceless.

My wee baby can swim!

Gaining confidence

He wanted glasses. Love this.

The youngest gets all the love.

As for the crushing terror, I will freely admit that after the first 3 solo days of summer, with appointments to keep and every ding-dang minute filled with incessant little girl chatter, I had a bit of a moment and snarkily asked my husband to bring home some "special medicine" to cure my erm, "itchiness."  This is one of my favorite Raymond episodes, where Debra is experiencing moodiness on her "ladies' days" as Ray calls them and being helpful, he buys here PMS medicine to soothe the beast.  She quite rightly remarks, "There's nothing in here for bitchy."  And well, sometimes, there's just no quick fix for that.





This week has been filled with appointments, too, and I'm looking forward to some real downtime.  It's our busiest summer to date, with typical stuff like VBS, and new stuff like a vacation to a little hamlet called Disney World and a week of day camp for kids on the spectrum.  The camp has hiking, swimming, and rafting, and it's so cool that J will be able to participate.  More on that to come.

On the Disney front, let's just say I spent an hour debating which magic band accessory would best compliment each child's band and then deciding it was a total waste of money and those suckers would be pulled off or chewed in 10 minutes.  Good times.  A women's mind is a labyrinth, y'all.  Be nice to us.

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.

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

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

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

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

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

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

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

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

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

It's just not that simple.

And I'm starting to appreciate it.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Basket of Happy

Today I received a gift basket.  As I was dropping the girls off for preschool (both girls, as in MOTHER'S MORNING OUT, Oh Happy Day), another preschool mom was waiting for me in the parking lot.  She heads up a Mom's group that meets at the local Methodist church.  I started attending this year on the invitation of a friend, now having a bit more freedom with my time.

This week's meeting topic was "The Mystery of Autism" and I'd missed it.  We had a plumbing issue arise and the repairman's window of time conflicted.  And truly, I wasn't sure how I'd feel in a group of "autism outsiders" discussing this subject as an insider.  I can get a wee bit, erm, defensive about it.  A bit prickly, I'd say.  I'd looked ahead to the week's discussion guide, and it started with an opener that had the moms imagine the limitations of autism, such as only being able to talk about a restricted subject or obsession.  Some part of that bothered me.  I thought about asking the leader to share from my own experience or just to come up with another entry point into the topic, but I didn't and let the impulse pass.  So when my appointment interfered with the meeting, I thought maybe it was just as well.  No need to have a cynic in the room.

When the group leader approached me today, I offered up my apologies and reiterated my conflict when she handed me a basket filled with cards and "little happies" and told me the group had prayed for me and another mom in the group with a child on the spectrum.  I thanked her and we chatted a few more seconds, as I placed the items in the car to take the girls inside.  When I got back to the car and began to unpack the basket, I opened up card after card that just encouraged me-- no "poor you, your life must be so hard"-- just encouraged me.  From one woman to another, with different experiences perhaps, but many in common:  womanhood, motherhood, and following God.

I had to text a friend the unexpected surprise (if something happens and it's not shared and photographed, it didn't happen, right?  This is 2014). In the text, I summed up my unspoken stance towards receiving someone's generosity:  Um, God. I'm supposed to do nice things for others.  I'm too competent to receive in return.

I believe the deep theological word for this is pride.  In the English it's pronounced PRIDE.  I don't know how it's pronounced in the Greek or Hebrew.

These are the dots I've been connecting lately: At some point in our life, we will belong to a sub-group we wouldn't have picked.  Mine's disability.  And when we are not in the company of that group, we don't want to be known by that label, in my case, "Autism Melissa".  No one wants to be Divorced Jane or Almost Bankrupt Mary.  And the trouble with that mentality is if that's how we think we are being perceived, then that will be how we perceive others' treatment of us.  Perception becomes our reality even if it's not the truth at all.  Obviously, I've read enough Personal Growth and Spirituality books to fancy myself quite the psychologist, but go with me here.

What brought me happiness today was that this thoughtful Basket of Happy wasn't addressed to AUTISM MELISSA.  It was addressed to me.

Someone who was cared for by a group of women who don't know me very well, but know God's gracious ways and extended them to me.  I don't attend their church, and I belong to a different denomination, which seemed like a big deal as a child growing up in the bible belt.  (The only time we mentioned our brothers and sisters in Christ who worshipped at the church directly adjacent to ours growing up was to exclaim from the pulpit that our parking lot had more cars.  God Bless Our Southern Baptist Hearts.  I do sincerely love being a part of this denomination.)

All of that to say,  I'll be at the Mom's group next Monday, with or without the clogged plumbing.  And more open to receive the unexpected.

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

Books and Covers and Gymnastics

The two big kids started a beginner's gymnastics class a few weeks ago and they are loving it.  Tonight in the waiting room, I noticed another mom outside the windowed door to the preschool gym.  I quickly inventoried her supple boots, slim jeans, cute bangle bracelet, flawless makeup (me: worn Levis, flats, muffin top but cute haircut and necklace so bonus) and subconsciously filed her under MOM > SUCCESSFUL, PUT TOGETHER and left it at that.  Pretty much not me, very much in the working file of MOM > HOMEMAKER >FRAZZLED, SOMEWHAT FRUMPY BUT TRIES OCCASIONALLY.

I moved to the bench next to her a few minutes before class ended to peek on my kids as they did a circuit.  I noticed J only wanted to do the "high" beam station, and kept shortcutting to return to this line.  I had to laugh and said something like, "That's your brother," to Rachel.

The pretty mom I was sitting by noticed Rachel, asked her age and remarked on her cuteness as you do with toddlers. Hearing my remark, she asked if that was my son.  "Yes, the one in dark grey... He's autistic... sometimes he has trouble following the instructions," I answer.

"That's my daughter," she points out.   I noticed her little girl on the low beam in a black leotard and sparkly peach gauzy skirt.  Petite and adorable.

Her mom tells me this little girl is missing half her brain, and thus has speech and learning delays, as well as hearing loss.

This woman is like me on the inside.

In the next few minutes, we share bits of our stories.  Her, how her daughter now has 20 words.  How she loves the little boys in her class.  How she's struggling to keep up in her special needs class, and is moving to another school.

Me, and homeschooling and therapies and learning to toughen up.  Sharing about a new language app that she might be interested in.

Both of us with that thing in our voice.  The love and the unknown and the vulnerability.

"But she's great," she assures me, after initially sharing the diagnosis.  "That's right.  That's right," I respond, recognizing my own tag line.

Our children have hidden disabilities.   Hers wears sparkles.  Mine wears button downs and sweater vests on Sundays.  We are careful to put their best foot forward.

We see their insides, which the world cannot.

And I'm reminded:

Snap judgements are alwaysALWAYSalways wrong.

We are more alike on the inside than we know.

A Few for the Win Column!

 Look what my boy did!  His OT presented me with this work sample and I asked, "Did you dictate this to him?  Cover his paper with your hand?"  She said she opened the handwriting pad with the alphabet as a model and he copied it on his own, with little coaching.  I just couldn't believe it.  My son?  Writing in the lines?  On task for an extended period of time?  Wow!  I'm such a teacher nerd, when I said  I'd be sharing this on the blog, the OT remarked that she hated to have marked up the paper.  "No! That makes it better!" I assured her.  Trusty are the marks of a red pen in the hand of a teacher.  I AM SO PROUD.  I just made a "kids' brag folder" in my Dropbox account.  I've got some masterpieces to begin saving. :)

Secondly, we had a major personal victory yesterday.  We've been working on toileting independence for 2 1/2 years with Jay.  It's been a major struggle and to be frank, a tremendous source of stress and even shame for me.  It took me a long time to understand that this would happen later developmentally for Jay, but it would happen.  I'm in the kitchen and I hear the sound of a male child going to the bathroom.  What's significant is that he is going without being told.  I ran in the bathroom, whooped and hollered, got Rachel in on the celebration and called Dad to share.  As I was leaving a voicemail, I almost doubted myself.  Wait... he was throwing bits of paper in the toilet as it flushed.. maybe he was playing... nope, saw him standing, heard the sounds, saw the hiney; he did it!

World, my son is consistently in underwear (Pull-ups, we are never getting back together, like EVER), is night trained, his tummy troubles are much better (not solved completely) and he chose to go the bathroom without Mom's nagging.   JOIN ME IN REJOICING! 

The Lord makes everything beautiful in his time, and this, all joking aside, is beautiful.

My son is beginning to make decisions for himself, because he can. 

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 Bracelet

At a Christian conference, I recently heard Pam Tebow speak about how she raised her family.  Of all the sessions and speakers I soaked up, her story of receiving a special bracelet from "Timmy" is the take away I have with me weeks later.

Before playing in Miami for the championship game, each player was given spending money for the trip.  The Tebow men apparently are last minute Christmas shoppers, and so, Tim used this money to buy his mom a bracelet.

It was a charm bracelet, filled with orange and blue beads, his football number, and other Gator related memories.  She wore it on stage, and emphasized that since her son picked out every detail of the gift, it was priceless.  She wouldn't change a thing.

You would never change a treasured gift.

"Love (your kids) the way they came packaged."

Bullseye, Mrs. Tebow.  Ouch.

It is hard to love every bead on my kids' strings.  For each bead I cherish: compassion and friendliness, affection and gentleness; there are others I would happily exchange.  Some I'd leave off altogether.

They seem wrong. Not my style. Not what I want.

Just because something is imperfect does not mean it's not valuable.  (Right, self?)

Yesterday was a "this is not what I want" day. Today is one of those "starting over again" days.

I want to see the beauty of the imperfect.  I don't want to disregard it and hope for something better to magically appear. I want to accept my gift. I want to treasure it.   I don't always.  Today I do.

Some wonderful, some painful, some hidden-- but each piece was carefully selected.

A few days after I wrote this as a draft, I noticed this little treasure.  15 seconds of receiving grace from my son.  I want to finish a task.  He just wants to be near me.  That's a 'bead' I needed to see right now.

The Good Autism Parent and Plain Ol' Me

Both of these personas reside in me.  I became Good Autism Parent (GAP) in an instant and operate out of this persona publicly and privately most of the time.  Plain Ol' Me (POM) is not getting along with her right now.

GAP accepts the totality of autism and embraces the differences.

POM is sick of feeling needed by her son only to dole out milk and cereal. Sick of his crashing to his knees.  Absolutely done with the concept of toileting. Wonders if true independence will ever happen here.

GAP rejects the terms cure and fix.

POM just can't see the good in erratic fear.  Rigidity.  I'd take some fixing there.  Divine Healing. Anything that equals GONE.

GAP exhausts every avenue of therapy, diet, exercise and educational models.

POM wonders how to change a diet that is so severely limited.  How much fight does basic sustenance need to be?  Milk, fries, cereal.  GAP probably thinks they are akin to poison.  Maybe they are.  The best way to teach her son?  Mentally hiding in the corner there.

GAP graciously listens to stories of families like hers and seeks advice.

POM hates that I have to mention my boy is "not aggressive" as if  I was describing a housebroken puppy. Hates that I have a hard time listing his personality traits. Hates pretending that a future for him other than FULL independence is okay with me.  Cause it ain't. It just ain't.

GAP modifies expectations for milestones and holidays.

POM remarks casually to my husband that I'd just as soon skip Christmas this year and turns into someone who'd be confused with a paid mourner.  Ugly, raw disappointment stuffed over time spills out.  Eyes so heavy and painful. Sleep can only make it better.

GAP reminds herself there is immense, immediate suffering everywhere, at all times.  Her needs, in every way, are abundantly met.  Her boy can do so much.  Walk, Run, Talk, Laugh. Love.

POM is starting to realize that a proper perspective doesn't negate the reality of personal pain.  Even the first world kind.

Both love the boy with a gentle ferocity. That's all they have in common currently.

GAP doesn't want to bum anyone out.

POM walks the tightrope of honesty with you today.  I'm put out with my boy.  Annoyed, frankly.  And that's unfair of me.  But it's true.  I don't have a pretty bow to wrap up this duality.

It exists.  And admitting that is enough for today.

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!

Our Autism Story In One Place

On April 1st, I sent my experience with autism out into the scary world of social media and to my surprise, was met with grace and understanding.  My hope is that another parent like me will find these posts and be encouraged.

Autism Posts:

I'm Ready (Signs of Autism and Diagnosis)

Meet Jeremiah (My Boy, Just As He Is)

The Climb (Our Therapy Approach)

Now (The Bittersweet Milestone of Turning 5)

Resources and Advice (What I'd Want To Tell You As a New Autism Parent or Loved One)

Have to Share: Ages & Stages Questionnaire

I was looking at the Easter Seals page for information and ran across this excellent resource for any parent curious about their child's development.  If you have true concerns about your child's development, this is free and confidential and something that you could bring to a doctor or professional to help in the screening process.

https://asqonline.com/family/1ac805/questionnaire

Also, this blog post on the Easter Seals site "Five Reasons Not to Freak Out" is a good read for newly diagnosed parents.

Have Friday, y'all!

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.