bio-miracle needed

For all who have been on depression hiatus, the sun is peeking through again.  Things are going much better in the last week!  Your prayers are felt on every level.  Jack's cold has subsided and his disposition is much more agreeable.  His language/communication the last several days has been adorable.  He is trying to say lots of things, doing great with imitation, having pretend conversations with his cute babble sounds, and indulging nightly in his favorite bedtime ritual: taking all of his clothes off and running around his bedroom naked with Livvie, while we toss them on the bed.  It is night and day difference around here from 4 weeks ago.

And here's a really great update - we have conquered the coat issue (knock on wood)!  We have been getting him to wear a coat and boots with less and less drama each time.  We do it together - everyone gets their boots and coats on, and he seems motivated enough by the idea that we're all going somewhere together to eventually tolerate wearing his.  So yippee for that!  But along that vein, here is what is not going so well:

I think I need body armor.

I mentioned in my last post the hat and mittens thing is a big problem right now.  He just hates them so much.  I can't get them on.  I've tried everything - different kinds of hats, different kinds of gloves, candy, cookies, going outside without him...nothing works.  I've even let him go outside without them for a bit, so he can see how much fun it is out there, but his fingers get wet and cold and after 5 minutes he's crying to go inside.  It seems at this point there just isn't anything that is motivating enough to outweigh how much he hates the way they feel.  And however frustrated I get in the moment, it must be ten times worse for him.  He resists with such fervor that the psychological distress I could only guess he is experiencing becomes palpable.  If he could tell me about it, I think this is what he would say:

"Mom.  I HATE this freaking hat.  I can't stand these stupid gloves.  I want to wiggle my fingers.  They are touching my wrists.  I want to pick stuff up.  This hat is driving me crazy.  It makes my head feel itchy.  I don't like how it touches my face.  It covers my ears and makes things sound funny.  Pleeeeease stop making me wear this stuff!"

So this morning I dropped Livvie off at preschool, came home and put Camille down for a nap so we could work on it together, just Jack and me.  It did not go well, and every attempt ended with hysteria.  Today I surrender, at least until dad gets home!  If it were just Jack, I swear, I would stay inside all winter if it would spare him the torment of getting all covered up.  But Livvie is in love with the snow, and it's so good for us to get a break from the indoors when we can.  She wants to play with her brother and her mom and dad without all this hysteria.  So I guess we will keep trying until we get there!

In the meantime, what we need is a biological miracle (thank you Adey, perfectly put!) Here's how we're praying:

Jesus, help Jack!  Would you lessen the severity of this specific sensory issue?  Help him be able to tolerate a hat/gloves/snow pants so that he can experience how much fun it is to play in the snow.  So that he can chase Livvie and build tunnels and ride in the sled and just burn his wonderful insane level of boy-energy in a really enjoyable way.  Bring peace to his sensitive little body!

Thanks for your continued prayers, we'll let you know how it's going!

ain't no sunshine

Warning

This post contains depressing material that may not be suitable for some enjoyment seekers.  Ain't no sunshine here.  Move along if that's you and check back in a few weeks.

It's so hard right now.  So hard.  And that feels like a ridiculous understatement.  I've been trying to write this post for over a week but when I sit down, I can't write it.  I try to think of how to boil down what makes this so impossible some days, lots of days, and I just cry instead.  A couple of weeks ago we had a visit from our parent-child educator, one of the members of the AEA team that sees Jack regularly.  We were having a terrible morning of explosive fits.  And when she and I sat down on my living room floor, and I began to describe what the days are like, I just lost it and started sobbing.  All I could squeak out was, "I'm so tired."  And of course it's so much more than that, but in those moments I can't even get it out.  I don't know what to say.  I just feel overwhelmed and hopeless.

I have tried to describe Jack's diagnosis in a way that I feel makes it the most understandable to an onlooker.  I think in my first post I said that in his particular case, PDD-NOS might resemble a "mild" form of autism.  And that's the best I can do to make it relatable to something people might know something about.  But I feel I've done a grave injustice to perception by using the word "mild".  Because "mild" autism is frequently unbearable.  Where we feel it the most, apart from the language difficulty, is tantrum behavior.  I have had a toddler with normal development - that kind of tantrum is not at all what I'm talking about.  I'm talking about extended, explosive, violent, unpredictable meltdowns.  The kind that causes injury to his self, or me when I intervene.  We both have bruises.  He often has scrapes and knots on his head from banging.  And over what?  Anything and everything.  Even though he's two, the bulk of the problem really isn't hearing "no", like it was with Olivia.  Often the worst tantrums arise from sensory things he can't talk about that are driving him crazy.  One blogging mother I've come across who has a little boy with PDD-NOS talks about her son's sensory issues this way:

"Do you ever have a shirt that has a tag on the back that rubs you the wrong way? Does the sound of nails on a chalkboard raise the hairs on your arms? Imagine sitting in a room wearing a shirt that has 1000 of these tags with everyone around you running their nails down chalkboards. Thats just the tip of iceberg." 

So here's what it looks like on a normal day.  Take just one example, going outside to play in the season's first snow.  I am inside getting all the kids dressed to go out.  I save Jack for last because I know it's going to be hell.  Putting on boots, gloves, snow pants, hat, coat.  Misery.  He hates it all.  He doesn't want anything on his head or his hands.  He doesn't want a coat.  He doesn't like the way it feels on his wrists.  I know because he often freaks out over putting on a long-sleeve shirt, or a sweatshirt or a jacket (not always, but often) and tugs and pulls at the sleeves until I roll them up.  He now hates boots because when we put them on he knows we're going outside.  He doesn't want to go outside because he'll be cold.  Why will he be cold?  Because he won't wear gloves or a hat.  He just pulls them off.  I have even tried rubber banding the gloves underneath his coat before applying a hat that velcros so he can't pull it off.  But he'll rip the gloves off with his teeth and then take his hat off.  He did the same thing last winter and it took several weeks acclimating to cold weather gear until he was used to it and would handle it.  But last year he weighed less.  He's now a 40-pound kicking screaming mass of muscle.  I literally have to wrestle him to the ground and sit on him to put on his coat.  Every day.  And even once we actually accomplish getting outside, it's screaming in the snow for the duration of our outing, or banging his head against the porch steps or the car, while I try to keep him from hurting himself, all while holding an 8-month-old and trying to pull a 4-year-old on a sled.  And even after I relent and bring us all back inside, the damage is done.  We're now on a short live wire that continues to be set off all day over nothing at all.  So what's the alternative?  Stay inside all winter where no coats need be worn?  That is death by a different method.  It's just awful. I have no idea how I'm going to make it through the cold season.  This is one example but it could be anything.  It could be that I offered the toy train instead of the toy car.  It could be that I turned on the wrong movie or pulled the wrong book from the shelf.  It could be that I started singing in the kitchen.  Or that I gave him the red cup at lunch.  Then the blue cup.  Then I took both cups back and gave him the green one with a fun twisty straw...still not good enough.  It could be that I'm not posed exactly the way he wants when I'm sitting next to him on the floor.  It could be that my hair is down and not in a ponytail.  It could be his socks.  Or his shirt.  Or his pants.  Or his shoes.  And in 10 seconds, we're in a stage 5 meltdown.  It's that fast and that furious.

I recently laughed with a friend at how I'm fighting to not always control every interaction between Jack and the world.  There is a show called Parenthood that has a subplot involving a family with a little boy with Asperger's.  I haven't seen it, but my friend described an episode to me where the mother hovers around the little boy, always intercepting the therapy team that sees him:  "Ooo.  Don't give him that crayon.  He hates the color green.  No don't give him the yellow one either, he hates that one too, it'll make him mad.  Whoops - he doesn't like the sound of that toy, can you put it away?  Fuzzy stuffed animals - no he doesn't like those, don't put it so close to him" and of course we laugh at how ridiculous it sounds.  Crazy helicopter mom trying to control every experience her kid is having.  And I can laugh too, because I often find myself doing the same sort of things.  But here's the striking reality from an inside perspective: as the mom of a child on the autism spectrum, it is 24 hours a day, 7 days a week of standing between your kid and disaster which strikes for no apparent reason.  It is never getting a break, doing your damnedest to stay ahead of the tantrum triggers, because when they happen it is all consuming and miserable for every member of the family.  It is dealing with the possibility that unlike other two-year-olds, they might not leave this stage behind.  I get it.

I would guess that we maybe have 1 day a week where he is really just great and fine about everything.  The other days it is the hat and gloves story all day long.  I told Jesus in the shower recently that I need it to get easier somehow.  Either Jack gets easier, or I need to get better at this.  Because I am struggling.  AJ and I have hit an awareness that we need him to go to school.  And let me tell you how it feels to wonder if you can only be a good parent to this kid if he is gone most of the day: shitty.

All this long narrative to say, I'm not looking for advice or suggestions (I know you wouldn't give it anyway!). Just a place to say how difficult it is.  How worn down I feel.  And ultimately, how much I need the kind of help I can only get from the Holy Spirit.  Pray to this end for me, friends.

a good place to lay down

Our pediatrician asked me a few months ago, after Jack was diagnosed, if I thought he changed after he got his 12-month vaccinations.  And I did pause for a moment to think.  Jack was such a happy, mild, easygoing little baby. Then he wasn't.  There was that lead test at age 1 that was slightly high.  Did he have a fever that day he got his shots?  Was it 12 months when things started to look different?  Or 14 months?  Did we miss something early on?  And thus begins the circle of questions that leads us who tend toward the neurotic back to the same place: somehow I did this.  Because to assign blame is a tempting momentary comfort.  If it could be the fault of someone the vaccine manufacturers or something the soil in our backyard laden with clay that he ate by the handful or, the very best, ME yes! now the self-loathing can never die! it would go down.  It would go down sharply, but at least it would go down.  At least it's not crippling helplessness.  At least it's not that something precious was stolen away right from under us and we can't get it back.  It's not a persistent question why? why? why? with no answer.  And this is how I am certain God exists: out of the noise of all my torturous thoughts a quiet choice bubbles up to the surface.  I am not helpless.  I can live the circle or I can embrace another way, put my angst to rest and press into Jesus.

I embrace another way.  I don't know how a person is woven together out of dust and marrow, or what elements influence them to be one way or another, or how those elements even came into play to begin with.  What I know is that Jack is now and has always been Jack.  New seasons blow in, old ones die out, and life always brings the unexpected.  But my growing, rambunctious, funny little boy is the same sweet baby I nursed and the same curious toddler who learned to walk.  It is the same Spirit that lives in and over him and calls him by name, that infuses love and purpose and meaning into ever step of his life:

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." -Jeremiah 29:11


Amen.  It's a good place to lay down.

Jack and Chubs also finding a good place to lay down.

a deeper well

Jackie hams it up in the Ped Mall

There is an old Vineyard song that I really love.  It is called "Spirit Song" and it was written by John Wimber. I love the lyrics, especially the last part of the first verse:

O let Him have those things that hold You

And His Spirit like a dove

Will descend upon your life

And make you whole

I feel like autism can easily gain a hold of me.  It is hard to shake.  My mind goes to places that are are uncertain and ambiguous.  What if Jack's case turns severe? How will school look?  Will he have a "normal" life? What will his relationships be like?  How will my life play out in relation to Jack's?  Who will take care of him when I am gone? 

Kimmie does a good job of re-centering me.  Thank God for her. Anyone who thinks God does not speak should get married to a woman like my Wums.  "We are not going to stay stuck," she tells me. "We are going to keep pressing into Jesus - no matter how painful it is." Without her, I start to spin my wheels. I go to  places where autism and worry consume me.  At times, the worry, doubt, and anxiety seem unending and inexhaustible.


Then again, the Holy Spirit is equally unquenchable.  I have felt him by my side, beckoning me to his well - a well that is deeper than my worry, fear, and uncertainty.  Some days I get there quicker than other days.  Some days I don't get to the well at all.  And yet, He remains, constantly calling me towards his living waters.  Help me keep saying yes Jesus...

he gets around

ID bracelet.
GPS tracking device.
Talking carrier pigeon.
Mr. Incredible suit equipped with real homing signal.
Some sort of flexible, invisible, impenetrable force field.
Automatic flame-resistant voice-activated flare gun.

Oh - hello.  I'm just making out Jack's Christmas wish list.

If you've followed our family blog, you'll have read just a handful of stories outlining some of the worst moments of my life, and they all involve Jack starting somewhere and turning up some dangerous elsewhere.  Jack wanders.  And escapes too.  He has MacGyver'd his way out of cribs, strollers, pack n' plays, houses, churches, cars, gymnasiums with one door that I'm sitting right next to...

After sharing many of these stories with them, our autism resource team gave us some literature about autism and wandering. As all parents of little children do, we keep alert to the big "uh ohs" for our under-fivers: pools, lakes, cars, the street.  But I was startled to learn that kids on the autism spectrum are twice as likely as their typical peers to die of drowning or prolonged exposure.  This is in part due to their tendency to wander and their natural curiosity about water (like many other children).  It is a great challenge, we're finding, to keep track of a little kid that often doesn't respond to his name and who is well-versed in "tuning out" people and things going on around him.  He doesn't know he is lost or in danger.  We read that oftentimes these clever little ASD kids are aware when attention has shifted away from them and will take the first opportunity to bolt.  I can't tell you how many times this happens to us.  We lean over to pick up Camille's pacifier off the ground, or help Livvie with her coat, or say hello to a friend standing in line at the coffee bar and he's gone - fast.  And we've noticed that he sort of camps by a door and slips out behind people who are leaving.  Thankfully he is getting more predictable and we have learned the hot spots. But when we're somewhere unfamiliar it is a major issue.

This is just another reason we know we are creatures designed to live in community and not alone.  Hillary was right - it takes a village.  We have so often relied on the watchful eyes of friends and the kindness of strangers.  It is sobering when you learn that you cannot always meet the 'basic requirement' of keeping your child out of a life-endangering situation.  To our amazement, there are actually state funded options that we can consider.  There is even money for improving your home to include special locks, alarms, and even a backyard fence for "runners".  We are looking into some of those options.  In the meantime we thank you for all the times you have found him, retrieved him, and not run over him with your car.  We owe you a talking carrier pigeon.

at the beginning

People have asked us how we knew something wasn’t quite right.  Jack is still only 2 after all.  Boys talk later than girls.  He has an older sibling that does all the talking for him.  My kid didn’t talk until they were 3 and then it all came out in a hurry.  Every kid is on their own development track.  We’ve heard it all and it’s all true.  To be honest, we didn’t know that something wasn’t quite right.  Jack developed completely on track until he was about 9 months old.  He sat up, crawled, walked, babbled, and began saying a few words all at the right times.  At 12 months he stalled out a bit.  He was still doing all the wonderful baby babble and a few rudimentary words, but it really didn’t look a whole lot different than 3 months earlier.  At the time, our (excellent) pediatrician told us it was certainly nothing to start worrying about but we definitely want to keep an eye on him and watch the development of his language.  We weren’t looking for ____ words by the time he’s _____.  We were looking for progress. By 15 months he had stopped babbling almost completely.  His few words were gone.  He was having tantrums that lasted for hours and would not be consoled.  A bout of ear infections caused his pediatrician to become concerned that this could be impacting his hearing.  Between 15 and 18 months some social concerns were bubbling to the surface as well.  Jack was not making eye contact, not pointing, not bringing things to us that he was interested in, not pretending, not imitating.  He was responding to his name so inconsistently we thought he couldn’t hear us.  Lots of little things that by themselves might not have caused much alarm.  But, as a whole, a bigger picture was starting to emerge.  The first step was to clear a hearing problem.  We had his hearing tested many times and after a few rough starts were able to eliminate this as the culprit.  We called the Area Education Association for an evaluation.  They came a couple of times a month at first, and when progress was not being noticed, they sent the Early Access Autism team over. He failed the M-CHAT twice, both by our parental interview and by the team’s interview.  It was at one of these sessions I first heard the A-word and it was alarming. Wendi, our team leader, wanted me to be prepared to hear it if we planned to take Jack to the University for an evaluation so that I wouldn't feel blind-sided...and she also encouraged me that whatever we heard, there was no word that could measure Jack's potential and all the things he is capable of learning and doing. Still, I felt rocked to the core. That day after school, AJ and I went to the park with the kids, and when we were sitting down alone with Camille on a blanket between us, I told him what Wendi had shared with me. We sat there for a long time, holding hands, and just cried. We cried until AJ stood up and wiped his face and said, "I want to hold my son", whereupon he swooped up Jack, who was playing happily in the sand, onto his shoulders. It was one of those moments in life where it's not okay - but you know it's going to be. We started seeing the Autism Resource Team regularly then, 4 times a week, when Jack turned 2.  I could sing unending praise of these people, but I will summarize: they are amazing and have saved our lives.

This past July, Jack was diagnosed with Pervasive Development Disorder Not Otherwise Specified (PDD-NOS).  You can certainly google PDD-NOS and get a zillion pages of information, but I think it’s overwhelming and not necessarily helpful.  So I’m boiling it down here as a non-expert, with the information I’ve gathered and maybe even more importantly, the way we’re experiencing it.  PDD-NOS is not autism...exactly.  It is an autism spectrum disorder.  See, aren’t you glad I cleared that up for you?   What it means is that Jack exhibits multiple symptoms of autism without fitting precisely into the category of ‘autistic disorder’, because he doesn’t meet criteria in one of the three developmental areas of concern.. There are 5 sub-categories of autism spectrum disorder: Classical autism, Asperger’s syndrome, PDD-NOS, Rett’s Syndrome, and Childhood Disintegrative Disorder.  Classical autism is diagnosed when there are developmental impairments in communication and social interaction, and when restricted repetitive or stereotyped patterns of behavior or interests are present.  Jack has not been observed to exhibit restricted repetitive behavior (I would say some of these behavior patterns are present but not enough to be diagnostically significant).  This, and I think the more qualitative fact that many of his symptoms are rather mild, excludes him from the category of classical autism.  His language/communication delay excludes him from the category of Asperger’s.  Rett’s syndrome and CDD are rare.  Only females have Rett’s and a diagnosis of CDD means there is normal child development up until the age of at least 2, followed by rapid regression.  This is not Jack.  That leaves him in this broad “other” category, along with roughly half of all children on the autism spectrum.  Some experts say there is a good chance that sub-category diagnoses will be abolished in the future, and all replaced with the more uniform Autism Spectrum Disorder (ASD).  In my opinion, it’s more helpful to think of it this way.  Especially given the fact that even in PDD-NOS or Asperger’s, which are thought to be the "milder" forms of autism, there are vast differences in level of functioning.  Regardless of the specific diagnosis, the therapeutic approaches are much the same, and intervention strategies are designed to fit the particular child, since no one case is just like another.  ASD more adequately encompasses the whole autism spectrum, from the high-functioning to the profoundly disabled.  

I think parents everywhere can agree that a diagnosis or a “label” could never capture the essence of our children or tell us who they are.  For AJ and I though, Jack’s diagnosis has been somewhat helpful as we learn to communicate what the specific challenges and needs are.  And in a big way it has helped us make sense of some things about his development that have been confusing.  We hope that knowing a little bit more about it is helpful to you too, our friends and family with whom we feel safe and known.

Here’s the “little t” truth: this is painful.  I want my son to be happy, healthy, whole in every sense of the word.  I want him to live freely and enjoy life.  I want him to have every opportunity, have amazing meaningful friendships, never feel like an outsider, never have to be different in the ways nobody wants to be different.  The world is hard on kids that don’t fit the bell curve.  I see him struggling so hard to be understood, much harder than the typical two-and-a-half-year-old, and I worry about what could be looming ahead.  It’s painful to AJ and I as a unit.  Often we process what we’re seeing and feeling and hearing in different ways and it’s work to interpret each other.  It sometimes goes badly.  I cry.  He cries.  We start over.  We keep pressing on towards a place we can land together, because we are both so in love with our little boy and we both feel helpless.


Here’s the “Big T” truth: Jack is a perfect gift from God.  And it’s not just one of those cute things mothers say about their kids.  I quite literally believe my son is perfect.  My life is so much richer because he is in it.  There isn’t even the smallest, quirkiest of his ways I would ever dare change.  He is smart and engaging and loving.  He is irresistible and draws attention to himself everywhere we go.  He’s a scary-good problem solver.  Ask anyone whose guardianship he has evaded.  He loves movie sound effects and has an iron-trap memory for them.  He’s destined to be a linebacker or a really big cross country runner...though the size of his rib cage leads me to believe he could make an equally fantastic brass instrument player.  He loves to chase and be chased, tackle and be tackled, bounce and be bounced.  He loves to be in front.  Period.  He plays with everything the “wrong” way.  He hates wearing things that touch his wrists but insists his shoes must stay on.  He spins in a circle when he hears music playing.  He spins in a circle when he’s in front of a full-length window.  He spins in a circle whenever he gets on an elevator.  He can’t resist running a marked line or walking a stone wall (a million times) and he’s sure-footed as a Sherpa.  He eats the entire apple whole, seeds and all, but spits out the skin as he goes.  He makes the best guilty face when he comes sneaking out of his bedroom at nap time.  And on and on and on...



Here’s what it all means for us: speech and behavioral therapy 4 times a week, lots of patience, lots of tears, celebrating the slow steady progress, re-framing expectations, rolling with the annoying comments made by less astute people at the grocery store/mall/pool/library/wherever else we’re brave enough to take him, sifting through services, preschool options, thinking ahead but not too far ahead, etc, etc...all while seeking higher education degrees, working, and maintaining some sort of connection to friends, family, and each other.  It’s complicated.  


Many of you have asked how you can offer your support.  First and foremost we covet your prayers.  This, I think, is gearing up to be one of those long life races.  I don’t know how long.  But we pray for Jack every day, as we do for Livvie and Camille, that he would be enfolded in the presence, mercy, love, and power of Jesus from now until.  That God would continue to stir up the person he is made to be and that as his parents we would have the wisdom to nurture, honor, and protect him as he grows.  Secondly, we love that you check in, understanding that some times we will want to share a lot and other times we may be able to say only a little.  And thirdly, we appreciate your sensitivity to Jack.  Some of you have asked how you should talk about him, if there are things you should say or shouldn’t say.  The answer is, we love you.  We know you love Jack (us).  We trust you.  If something feels not quite right we’ll say so, and we don’t expect any of this to be first-nature to any of us.  We’ll all figure it out together as we go.

When we reflect on what our life looks like, what the people in it mean to us, we taste and see the goodness of God.  Strength for today.  Bright hope for tomorrow.  We have everything - Jack has everything.  We don’t know where we are going yet, but we know we’re going with you, and we are so grateful.  Thank you, thank you, faithful friends.