sibling love

What could be sweeter?

 Big sis Olivia and Jack

are you my mother?

I've been doing a little jogging lately.  Well, not jogging exactly.  It's more like loping.  I've never been much of a runner.  This is ironic, considering my height and build, but true all the same.  In this season of life however, with 3 little kids who are busy from the moment they wake up until the moment they crash at night, quiet is something of a rare jewel.  So AJ and I have been trading off for 30 minutes a day, getting out and exercising and taking in the quiet sounds at the little nature trail up the street.

It's a good time to pray, listen, and let my mind ramble where it will.  Every once in a while I do get stuck in my rambling, and with school fresh behind me, it sounds a little something like this in my head: "I wonder how much ATP I'm getting from glycolysis right now?  Probably not as much as I'm getting from the beta oxidation of my fatty acids.  Way to go electron transport chain, you are awesome!!"

But these days I have other great things to think about.

I may have mentioned before that Jack doesn't call me anything.  When he needs something, he will yell from the other room.  "HELP!" or "AAAHHHH!" or "NO NO NO NO!" Or when he's not particularly wound up, he'll come and get me with a cute little grin plastered to his face that I can't resist.  "Cheese?  Juice box?  Cracker? Fruit snack?"  But he doesn't call me a name.  It's funny how AJ and I weren't even really consciously aware that was missing until Camille started calling us mommy and daddy.  Of course, we know he knows we're his parents.  He just hasn't figured out what to call us yet.

And then a couple of weeks ago, it happened. AJ was busy in the kitchen when Jack ran in.

Jack: "Help!  Help please!"
AJ: Hold on buddy, just a second.
Jack: "HELP.  HELP PLEASE!"
AJ: Just a second Jack.
Jack: Dad.  HELP.

Just like that. It was music.  Of course I was thrilled he said 'dad', and he's been saying it daily ever since.  But longing now all the more to hear him call me mom.

Fast forward a few weeks.  I have tucked the kids in to bed and I'm cleaning up.  AJ is getting Camille down to sleep in her room.  Then we hear in singsong, from down the hall, "MOMMMMMMY!"  I thought it was Camille.  Then AJ poked his head out of her room, "Did he just say mommy?"  I go into Jack and Livvie's room, and Jack is grinning on the floor (he likes to sleep in his bean bag chair on the floor).  I think he knows he's just done something dramatic.  "Mommy!  Mommy!", he says again.  I'm too shocked to cry, I just smile and say, "Do you need mommy?  What do you need Jack Jack?"  He replies, "Story book." and then goes to get a book from the bookshelf.  It doesn't matter that we've been reading and playing for an hour, and it's now 9 o'clock.  I will stay as long as he wants me to.  And in the most poetic gesture that has ever been made, he hands me one of my favorite books that he's never showed the least bit of interest in:
Are You My Mother? by P.D. Eastman.

So we read Are You My Mother a few times, he snuggles in to bed and drifts off.  It doesn't hit me until I'm out loping the next morning what mountain-shifting event has just occurred in my heart.  Mommy.  Mommy. The most beautiful word I've ever heard.  This morning it's easy to turn off the ramblings of my busy mind.  I close my eyes and listen to the quiet sounds around me.  The drumming of a woodpecker.  The fanning of leaves in tunnels over my head.  The steady tinkling of the creek.  Everything that is breathing and living and moving.  They're all saying Mommy.

happy birthday jack!

May 2nd, 2008, 11:30 am.  At 5 cm dilated my labor was jump-started with pitocin and at 1:21 pm, a screechy 8 lb 13 oz baby boy was in my arms, pink and perfect.  Just under 2 hours from start to finish.  What a good boy.  I remember feeling...terrible.  Like I needed to throw up and needed to eat and needed a blanket and needed the heat turned down.  I was shaking so badly I had to hand that precious bundle off to dad.

AJ, lit up like the 4th of July: "We have a SON!  You're so cute buddy!  Honey, what do you need?  What can I get you?"

Kim: "Um, drugs?"

AJ (laughing): "I'm on it - be right back!"

"We'll take him down to the nursery, get some measurements and give him a bath", the nurses said. "That happened fast, why don't you rest for a bit and we'll bring him right back!" My post-delivery shock would not allow me to protest.  They wheeled me into a recovery room after a brief visit from Aunt Carrie and gratefully, I crashed for a solid hour.  When I woke up I ooohed and aaahed my way through a dozen phone pictures AJ had sent of Jack in the nursery and texted my reply: "I'm awake and I want my son!! Don't come back from the nursery without him!!" Moments later, in strolled a glowing AJ and his new boy.  Jack buried his not so tiny body in my arms and we've been inseparable ever since.  

As I reflect on the last several years with all their many ups and downs, I'm reminded of Jack's 2nd birthday.  We gathered friends at the park on a cool and windy Saturday.  I remember that he was distant, disinterested in presents, the cake, and the other kids coming and going.  That was two years ago.  We had just been told that it was likely Jack was autistic.  We were at the beginning of our pain that this boy, who was once a happy, bouncing, smiling baby was now a frustrated, inconsolable child, unable to communicate and in a world of his own.  I remember that he kept wanting to run away down the path at the park by himself - no, not by himself, but with me.  And in my culminating worry about his development, I remember that it was a day God "caught" me right where I was and showed me a different and precious perspective.  Here was my healthy, energetic little boy, wanting to steal away with his mom for a run down the path and a soak in the cold creek water.  We laughed and splashed all alone, and I knew the way you know when you're front and center in a moment you will never forget with one of your kids. "You're going to remember this forever," I told myself, "because he won't always want you to scoop him up in your arms and steal him away."  So that day is etched in my memory, and now when I look at this healthy, energetic, smiling, self-appointed "baby sheep" and recently converted "birthday enthusiast", I  close my eyes and say, "Jesus, what a gift.  Thank you."

Happy birthday Jack Jack.  I love you so!

-Mommy sheep

i don't like you

I just looked at the date of my last blog post.  August 2011.  There's not really an excuse other than August 2011 marked the beginning of a really tough year for AJ and I with school, and for all kinds of changes following our move to a new house and two kids in preschool.  For those of you who still have us linked to your Google feed, thanks for checking in, and here is an extremely long-overdue update!

Jack is...just...totally amazing.  He has had a GREAT year in preschool and is about to finish up.  He will not go to summer school this summer, on the recommendation of his teachers.  We're so thrilled they think he can handle going the summer without extended services, and we are happy to give him a break!  His language is really coming along, he has made huge leaps in social interaction/relating, and we feel like he's at the point where he understands most things we are saying to him.  It's really stunning to see his progress and I promise to post some pictures and video soon so you can see.  He is enjoying books - BOOKS!  With words and pictures!  He can identify a variety of numbers and letters - he can spell his name.  He can count, point, chatter and play games.  All those little kid things you don't even notice are happening until they're not.  If I camp out on this theme too long I swear I'll start sobbing and not be able to finish this post, so I'll just keep moving along...

Not long ago I was looking for some medical documentation and came across some notes from our pediatrician's office from when Jack was about 15 months old, and we were first starting to wonder if there was something going on.  As I scrolled through the notes, one section caught my eye:  "Mother reports Jack has said the word 'duck' and has made consonant sounds 'ma, da, and ba', but has since stopped saying them."  I am happy to report that Jack says the word "duck" followed by a quacking sound every time we drive by water, and for the first time not two weeks ago called AJ "dad".  First time.  We are over the moon.

Speaking of firsts, I believe we've heard his first full sentence.  He has been stringing a couple of words together for some time.  It used to be only on prompt, but now he does it without cues: "Help please! Shoes off! All done! Come with me! Get down! Let's go!" and my recent favorite "Hey - wait a second!" All exclaimed with resonating drama worthy of a Broadway stage. I thought it couldn't get any better.  But the last couple of weeks I've become aware of him saying this phrase over and over again when he gets upset, particularly when he gets upset that we've said no to something he wants.  His eyes fill up with tears and he points at me and says this thing, and I've been listening so hard to understand it.  Tonight I finally got it.  Are you ready for this?

"I don't like YOU!!!" (With a dramatic finger point aimed at my eye.)

Ok.  So I know there are no parenting awards handed out for laughing when your child says something disrespectful.  But it feels like such a miracle that he is not only saying a FULL sentence with a subject pronoun, he's also using that sentence to express an emotion. THIS IS HUGE!!!!!  Tonight I pretended not to understand so he would say it again.  I hope he tells me he doesn't like me when I get home from this coffee shop later. Heck, I hope he tells you he doesn't like YOU the next time you see him!  As a mother, I have never more enjoyed hearing one of my kids tell me they don't like me.  Best feeling ever.

I did compose myself and (runner-up award here) correct his sincere but maybe not so nice expression.  "Jackers, it's not very nice to say 'I don't like you'. You can say, 'Mom, I'm not happy'.  Let's practice.  Say 'Mom, I'm not happy.'"

"Mom.  I not HAH-ppy."

I could eat him up.

Lately, I've become increasingly aware of something so profound.  When we found out about Jack's autism, we prayed night and day the prayer of desperate parents: "God, please let this not be so.  Let him fall off the spectrum.  One day, let him wake up and be a typically developing kid. We need a miracle."  As time has passed, and Jack has grown, and we have grown, I've realized that God did the miracle we prayed for in us, not Jack, who has been and always will be just our completely perfect gift.  We've been  changed forever by this little person he is.  We've been dramatically impacted, forced to see the world around us in a different light.  We're being taught important lessons about human value, about patience, about the power of support, about seeing past the obstacle to find the great treasure.  It's 100% because of him.  He is the miracle, and I'm just so grateful.

(Epilogue: We have so many fun things planned for this summer and just can't wait for it to begin! Stay tuned for much more frequent udpates, starting as soon as my finals are over on May 10, anticipated to be the next happiest day of my life.  Can you bring wine coolers to a final?  If not, that's totally bogus.)

boycott

This will be the first day of our official boycott of the North Liberty pool.  It all began when we showed up this afternoon at 4 pm, ready to enjoy the last summer day before school starts.  We have a family membership at the Coralville pool, but thought we might all enjoy a change of scenery.  The first disaster was that their one and only slide that little kids can ride was all boarded up and out of commission.  Didn't go over well and we spent about 15 minutes convincing Jack to play somewhere else.  There were numerous whistles going off that he was running too fast, wearing arm floaties, standing on water medians that were off limits, etc., but the final nail in the coffin was when the acting manager, who looked to be about 17, told us that Jack would have to wear swimming trunks over his swim diaper.  The last 8 weeks he's simply refused to wear trunks, they chafe and rub and he just plain doesn't like them, and we've had no problems at the Coralville pool.  He's wearing a swimming diaper that's specifically functioning to trap poop before it gets into the pool, so AJ felt compelled to challenge this.  

AJ: Is it really a rule?  Like on paper somewhere?  Can I see it, it's not posted anywhere around here.  

Acting manager: You want me to show you a piece of paper with the rule on it?

AJ: Yes, exactly. Thanks!

It took about 30 minutes for the paper to be produced, during which time Jack splashed in only his swim diaper-esque speedo.  But she did bring it down.

AJ: "Thanks for doing that.  I can see that it says regulation swim wear is required, which is why we have him in a swim diaper.  The truth is, he has some sensory issues and won't wear swim trunks.  Do you think an exception could be made?"

Acting manager: I'm not sure.  You'll have to go talk to the other manager upstairs.

AJ: "Well I can't leave my kids and I'm not going to bring them with me.  My wife is in the indoor pool with another one of our kids.  Could the other manager come down and talk to me here?"  

10 minutes later...AJ and I have met up at the outdoor portion of the pool to talk to the other manager...and we're simultaneously trying to keep the kids un-drowned.

Other manager: "Hi what's the problem?"

AJ (cutting to the chase): My son is autistic and he has a real hard time wearing swim trunks.  We've got him in a swim diaper to keep any poop out of the pool and we're watching to make sure he doesn't go.  I understand that swim trunks are required, but is there any way you can make an exception this one time?

Other manager: We had a big problem last year with poop in the pool and I'm afraid we can't make an exception.  (It's at this point Mimi breaks away from me and makes for the indoor pool section with Livvie hot on her heels.  I excuse myself to chase them.  They are cut off by a life guard exiting the guard station, who gives a dramatic, Whooooooooaaaaa and steps in front of them.  She then glares at me and says...

Snotty lifeguard: These two are WAY too young to be running around here alone.  (I'm literally standing right behind them.)

Kim (blood starting to boil): They're not alone, thank you.

She actually tries to cut me off here with a retort, which I interrupt in a voice loud enough that people look over...

Kim: They're NOT alone, THANK you!  

I am now fuming as a rejoin AJ's conversation with the two managers.  I get there in time to hear them say that we're going to have to leave if Jack won't wear swim trunks.  

Kim: You can't make an exception even for a kid with special needs? 

Other manager: No I really can't. But you can call my boss, she's here M-F from 9-5.  You could ask her for a refund.

AJ: You can't give us a refund right now?

Other manager: No, I'm not authorized to do that.

So we left.  It was hard to do that.  I'm sure it won't be the last time.  We found it so ridiculous, unfair, and unnecessary.  If a community facility can't make an exception for a kid with special needs, then I call it an abysmal failure on behalf of the community.  We went directly to the Coralville pool and had a good hour of swimming and feeling at home, in more ways than one.  We've become friendly with several of the life guards there who know us by name, know and adore our kids, and just generally support us to have a normal family experience despite a few of our abnormal circumstances.  Emma, one of our favorites, came right over to say hello when we set up our chairs. We explained that we'd just been kicked out of the North Liberty Pool, told her what happened, and were so grateful for her response.  "That's terrible.  I'm sorry!  That would never happen here.  Jack could do anything, we just love him!  And we all think you guys are great parents, always attentive and close by."  

So I'm grateful in the end, for that glimmer of truth and a little justice.  Needless to say, we'll be Coralville pool lifers.

wheel fun

A little clip of Jack at speech camp with grad student Sarah, who works with him.  He likes to be there and has little difficulty jumping right in.  He's made a lot of great strides, one of which is his attentiveness and willingness to sit for an activity like this one.  It's been fun watching - take a peek!



(What Sarah's doing is modeling a word a few times, getting him to repeat it, then holding up the object and waiting for him to use the word on his own.  His word repetition after prompting is taking off, but he still usually has trouble coming up with a word that hasn't just been said for him.  He either can't quite pull it up or it comes out a little fuzzy, like in the video. But he's trying, and being motivated to try is a big step!)

far too long

Since the last update.  So sorry!  A full update in paragraph style would take far more time than I have to write and far more than you have to read, so here are the highlights on what's new with Jack:

• Jack did 4 weeks of preschool at Twain Elementary in May.  It was awesome!  Teacher is amazing, we're already seeing improvements in relating and some speech progress.  He starts again in the fall with the same group of 8 kids and I'm happy he'll return to something familiar.  
• He started summer preschool.  It's just 3 mornings a week for the next 5 weeks.  A huge yellow school bus rolls up to the house to pick him up and drop him off.  Though I managed dropping him off at preschool pretty well during the month of May, there's just something entirely different about putting your 3-year-old, who doesn't talk and who doesn't understand where he's going, on public transportation and watching it drive away.  I cried for a bit the first day.  The 2nd day was harder because when he saw it rumbling down the street he knew what was happening and had a freak out at the end of the driveway.  Of course when a bus stops to pick up a kid that's screaming and kicking as we drag him, traffic backs up on both sides of the street and everyone gets a chance to reflect for a moment on the terrible parents that are making their 3-year-old ride a bus.  Isn't he too young for that?  Gosh they're so lazy.  They could just drive him.  Losers. 
• He got into this selective preschool program on the grounds of having gained a functional skill, yay for Jack!  He has begun to initiate communication by using a word or a sign (as opposed to just screaming or hitting you).  It's so fun, I mean SO fun when he walks calmly into the room, looks me in the eye intently like he's searching for just the right thing, and says "Hep (Help)."  It makes me teary every time.  We are so proud of him.  He is still copying words and he has a renewed interest in signs, so I've been adding a few more to our daily repertoire.  He can use drink, milk, help, please, sorry, eat, story, blanket, bath, come, sleep, more, cereal...probably a few more that I can't think of off the top.  We've started to add in some fun ones like airplane, horse, tree, swing, train, school, truck, sun, moon, apple, bus.  We're all learning a lot!  And I've noticed he's able to categorize things a bit more, something that can come a bit slower for kids with language delays.  Like this morning I asked if he wanted milk and made the sign for milk.  He used his word approximation for drink and made the sign for drink.  So that's good!  
• Insurance stuff is still a disaster.  We're trying to get on two different waivers in the hopes that one will go through and we can get Jack's speech therapy covered.  The waiver we thought we were getting on (Intellectual Disability) completely fell apart and now they're saying he probably isn't eligible for it if he doesn't have a MR (mental retardation) diagnosis.  Because of his age it is possible that they may be able to interchange the terms PDD-NOS (his official diagnosis) with MR unspecified, which would get him on the Intellectual Disability waiver, but he needs another evaluation at the CDD before we can talk about that.  I think it's going to all come down to how he performs on an IQ test.  I hate the thought of making him take one.  Feels really yucky.  But right now it seems like our best shot at getting him the speech help he needs. The process at CDD is tricky because our insurance won't pay for any intellectual or behavioral testing of any kind, so DHS is trying to get the cost covered.  In the meantime, we've filled out a detailed 15-page report for determination of disability that goes to the state, and it will be a minimum of 3 more months before we hear anything from them in regards to Jack being eligible for disability.  He needs this eligibility to even get on a wait list for the other waiver (Mentally Ill and Handicapped) that would grant him speech therapy.  The wait for that waiver is 12-18 months after the 3-6 month wait for determination of disability.  Sigh.  In the meantime he's at Wendell Johnson once a week for a speech program that we were fortunate enough to have grant funds for.  You could pray that this grant would renew for us, which will get him a little more speech after the program is over in July, and buy us some more time while we wait.  The short version of this narrative is that we've been sent on an impossible runaround for the last 6 months with totally unhelpful state employees that have no idea what they're talking about.  I've had to do a lot of people's jobs.  It's really annoying.  
• Here's some more good stuff.  He's in love with me.  Like more than normal.  He wants to snuggle, kiss, cuddle, hug, constantly.  I love it so much.
• He's getting faster on his Strider bike.  Hard to keep up with him now!
• He's sharing a room with Livvie.  We weren't sure how this was going to go but I think it's helped him make the switch to the new house so much better.  We got them bunk beds thinking that would be the ticket.  He will only sleep with Livvie in her bed.  It's so sweet.  She lets him, and puts up with his smothering and following her to the bathroom. (Such a sweet girl, so grateful for her larger than 4-year-old-capacity tolerance and compassion).
• Best kid ever.  Have I said that lately?  It's still true.