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.