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.  

jack's big day

It was a day of mixed emotions for me beginning just before 6 am, at Jack's preferred wake up time.  Big day for a big boy - he started preschool!  AJ and I raced around early to get everyone up, dressed, fed and out the door looking modestly presentable by 7:45 am.  My hat is officially off to parents that must do this every Monday through Friday.  I have grossly underestimated the kind of planning it takes to pull this off and actually be somewhere when you need to be.  But for my first day, not too shabby.  We pulled out of the driveway at 7:51 and arrived just a few minutes early over at Twain elementary.  The drop off went precisely as I expected it to - a few moments of excitement from Jack as his eyes swept over his new indoor play ground, complete with multiple Thomas the Tank Engine books, stuffed animals, sensory boxes (super great idea for a chair alternative!) and a computer that he is actually allowed to use.  Which quickly collapsed into realization that I was leaving...him...there...

Ok so I'm used to tantrums by this point.  It's part of our normal every day life.  But to leave him for the first time in a big boy classroom crying with people he doesn't know was harder for me than I thought it would be.  I got teary as I left the building with Livvie asking me, "Mom, is Jacky going to be okay?"  Ummm, I don't know.  But I came up with something better than that.  "Remember honey, when you started preschool last year, and you were so excited but kind of sad to stay by yourself without me?  Well Jack just feels a little sad because he's not used to it yet, and he doesn't know how much fun it is.  He'll get it soon!"

I was so anxious to pick him up at 12:30.  I kept staring at the clock on the wall as the minutes ticked painfully by during chem lecture (last one, praise God).  I drove over to Twain and parked illegally in the circle drive, so we could make a fast getaway.  Down the hall to Mr. Jordan's room, where he met me at the door.  The other kids were napping on little yoga mats, cute cute cute.  Jack was outside with Doris (who he has since referred to as "Dora".)  Nothing but smiles and hugs when he saw me coming.  A GREAT first day, followed by a GREAT first week and nothing but fun until the end of the year.  We are ready to begin again in the fall!!!

he doesn't say much, but...

...there doesn't seem to be anything wrong with Jack's logic.  We've been going to the Wendell Johnson Speech and Hearing Clinic for weekly speech appointments, and Jack's been getting reacquainted with his old nemesis, PECS.  PECS (for Picture Exchange Communication System) is a communication method for individuals with limited or no speech.  It has several useful functions, not the least of which is that it encourages a child to initiate communication by bringing or pointing to a picture of something they want, need, or feel.  It also serves as a visual teaching tool for performing certain tasks:

It's frequently used in schedule format so that the child can see what's coming next in their routine, hopefully making transitions a bit easier.  This is where it totally broke down for us at home.  Showing Jack the pictures of what was next usually provoked a melt down.  He didn't want to be reminded that he was going to have to stop playing with Lego blocks soon and get in his booster seat for lunch.  Nonetheless, PECS has made its way back into his life and though he put up a bit of fuss about it at first, he's actually latching on to it pretty well.  They've been using a triangular felt board with a "First/Then" design, storing the pictures of all kinds of activities on the back of the board.  First we do puzzles, then you can have a fruit snack (his ultimate motivator).  Last week when we went in, they had the room all set up with toys and puzzles and coloring sheets, with a very structured plan for the order of activities.  Under the "First" slot on the board was a picture of building blocks and under the "Then" slot a picture of, what else, fruit snacks.  Jack promptly walked over, removed the picture of the blocks, pulled a 2nd fruit snack picture from the back of the board and stuck it under the "First" slot.  Then handed it over to the grad assistant.  Smartie pants!

a week of miracles

The last week has been miraculous. We got a call from DHS two weeks ago saying that the waiting list for the Title 19 Intellectual Disability Waiver was reset or cleared out or something. Bottom line - somehow Jack Leman is one of the first names on the waiting list. A week after that call we got a letter saying a slot has now opened up and it's ours if we want it. (!) I met with a case worker today to deliver some medical records and sign some paperwork, and barring any unseen obstacles, once the state gets it some time this week they will review his evaluations and then we're in. What?!? We expected this to take anywhere from 12-18 months. I'm told to get the same thing in Illinois takes several years. I am overwhelmed with gratitude. What this basically means is that Jack will be insured under Medicaid, granting him access to therapies (speech in particular) that our own insurance company won't cover but that he truly needs. This will be at little to no cost to us (hallelujah, because it costs $330 a session at the University).

Timely news, especially since we just received a $1,455 bill from Jack's visit to the CDD last July. We're still not sure why and have lots of phone calls to make to try and clear this up. It looks like it was billed under some code for behavioral testing, which our insurance company won't cover. We're going to have to try to get the hospital to code it differently and resubmit. What a pain. And in the end I don't know if we're going to be able to get out of it. But miraculously (really can't use this word enough, wish there was some way to make the font glitter and put halos over the vowels) we were informed this same week that our family qualified for some grant money that we can put towards therapy costs that aren't covered. So even if we can't get the bill changed we can at least knock out a significant chunk of it.

And the other miracle is that full-time school for me and full-time preschool options for Jack are unfolding in the most logistically perfect way for next year. I am on my knees thanking God. This was causing me so much stress. I just couldn't figure out a way to make all of it work and I was feeling all kinds of anxiety about this transition for my little super-delayed-not-even-3-year-old. AJ and I visited 3 special education preschool classrooms today and they were so wonderful. The teachers were amazing, the kids were adorable, and it just set me at ease. I walked around picturing him in the school and confident that this was going to be a great great thing for him.

On a progress note, Jack recently started some speech therapy with graduate students supervised by a licensed speech-language pathologist, and he is doing so well! He has really become so much more verbal in the last couple of months. His word attempts are coming right along and today he even walked over to me, looked me square in the face, and said "hep" (help) when he was trying to move a big box. I was so excited. He also made his first piece of art. At the speech clinic he used a glue stick and stuck a bunch of cut out shapes on a picture of a cow. At the end, when he brought it over to me, he gave me this huge open-mouthed smile like he just knew how amazing it was that he made this. And when I squealed, "did you make this cow?!" he beamed, "Caaaaaawww! Booooo!"

I've been so teary this week, watching him play and work. He's growing up. He's such a big boy, he's so full of curiosity. I was teary when we walked through the elementary school this morning. I was teary when I watched him at the speech clinic, thinking about how far he's come and how ready he is for the next step. I am so proud of him for all the struggle and all the frustration and all the waiting. He's the most incredible little person and I'm just so glad he's mine.

Generosity: Lessons from Jack

Last week, Kim and I were invited to share part of our story at church. Adey gave the teaching and we both spoke as well. It details much of our journey. It was amazing and heart wrenching all at once.

Here is the link: Lessons from Jack

You can download the Mp3 file, or just play it from the page.

update #3

Update on Title 19 waiver application:

It is now physically in the right building.  However, it is not actually the title 19 waiver.  It is something else we were given that doesn't apply to us at all.  Great.  Stay tuned...

wretches and jabberers

Only a few moments before off to bed but AJ and I just got back from viewing Wretches and Jabberers at a screening in Iowa City with friends Tom and Adey. We are completely undone. If my life stops right now then it will have been well-lived just for seeing this film.

I have so many thoughts swirling about it but here's the most insistent:

"God chooses the foolish things of the world to shame the wise, the weak things to shame the strong, the lowly things and the despised things - and the things that are not - to nullify the things that are..."

The marginalized. The oppressed. The outcast. The wretches and the jabberers. I am humbled beyond words and want to soak it up deep into my soul...

Update #2

Well crap.

The funding agency to whom we turned in our grant application and supplementary income waiver (several months ago), for money to reimburse Jack's upcoming therapy costs, lost our paperwork.  And we thought we were on the waiting list all this time.

!*&@#&*!

Starting over.

finally an update

Air.  Surface.  Light.  Finally coming up!  It has been a long time since my last post, I apologize.  This is a tough time of year for us with school and endless cold and being stuck indoors.  I feel that even when I sit down to write or be productive, it takes 100 times the effort to get something out.  Everything moves in slow motion in Iowa in February.  But...

Jack is doing great.  First the difficult stuff: last I posted we were in need of a bio-miracle.  I wish I could say that over the course of the last 8 weeks we conquered the hat and gloves issue, but we did not.  Now we are just hanging in there until March, when we can at least count on more 50 degree days that require fewer layers and more general ease being outside!  We had a stormy couple of weeks in January while we battled an ear infection and an endless chest cold.  The other night when we were brushing Jack's teeth we noticed he finally got one of his back molars.  Poor little guy.  I had a difficult awareness recently of how hard it must be for him, that because his communication abilities are so delayed there's just no way he or we can explain anything.  He can't tell us that his ear hurts or that his throat is sore and he needs a drink of water.  Or that when he woke up and it was dark he felt scared because he didn't know where he was for a minute.  Or when he walks out of his room crying and rubbing his neck, and it seems like he probably slept on it funny, I say, "Oh honey, does your neck hurt?  Let me rub it and it will feel better in a minute."  But he doesn't want me to touch it.  I know he doesn't know what I'm saying.  Or that it will feel better in a few minutes.  If his arm falls asleep while he lays on it, he doesn't know that terrible awful tingly feeling is going to go away and he can't receive comfort from me.  I just pray in those moments that God would put his arms around my boy and bring comfort.  It seems like a bunch of little things - after all, the tingly feeling will go away, the ear infection will eventually subside, awareness that he is still in his familiar bedroom will come and everything will be normal again.  But while his mind and his body keep growing, those little things stack up over the course of the day and I know they affect the way he is experiencing life.  So we need some more improvement in that receptive-expressive language area and covet your prayers for increased comprehension.

Now the good stuff!

When he is free from an ear infection and nasty coughing that keeps him up all night, and pain from his big boy teeth coming in, he is just a delight.  He has been giggly and interactive and playful.  He's doing awesome in his ABA sessions and is picking up all kinds of new stuff, particularly making great strides in imitating and matching pictures with their objects.  He loves his train set, jumping on the bed, tackling us, splashing in the tub, reading his books at night and bashing around the Children's Museum.  He is forming a bond with Livvie who has declared that she is going to marry her brother Jack.  (It nearly brings me to tears as I type that, it is so wonderful.)  He is copying our word games.  I say, "Jack - who do I love?  I....Love...." and he gets a big grin, points at me and says, "DOO!".  We do itsy bitsy spider at night, he loves the motions and tries to say a few of the words.  I can tell how hard he is trying to get them out and we try to acknowledge his attempts at over-the-top level and make him feel confident about using language.  We've suffered some setbacks in food.  He is having a lot of trouble using his spoon and is getting picky about what we give him (not so unusual for a not yet 3-year-old, I know).  He actually eats better in a high chair. I think he feels comfy and secure in one. But we're trying to treat him like a big boy even if it means less food consumed, more on the floor, and lots of verbal reminders to stay in his chair.  We are thinking about trying to get him into a booster seat again, and maybe bringing Livvie into the plan for influence.  He seems curious about the things she's doing and she likes being the big sister setting the tone.  Win win.

We're having a lot of difficulty with our insurance company.  They won't cover any speech therapy, even though recommendations abound from the clinicians we've seen, because his "disability" is developmental and not the result of some sort of accident (like a head injury or a stroke).  That is frustrating.  We've called numerous times, had various care providers submit claims, tried going through different organizations, and still no luck.  Until we can get our state insurance waiver approved  (probably not for another year) we might be out of luck.  They will however cover occupational therapy up to 80%.  Which is timely, since we've recently run into some new sensory issues and have called on our trusted early education agency for help once again.  An occupational therapist from Grantwood AEA, Patty, paid us a visit and spent two hours going over the results of Jack's initial evaluation with me.  Where Jack tests out on their assessment tool is exceptionally 'high needs' in both the sensation seeking and sensation sensitive categories.  Seems contra, I know.  What it means is what we already know about him - he needs intense "punched-up" sensory experiences with high physical input (jumping, climbing, wrestling, swinging, spinning, turning upside down, being pushed, pulled, squished, squeezed) and also lots of structure.  Bleck.  Wasn't excited to hear that.  It's exceptionally hard to provide that at home right now because of lots of factors, not the least of which is two other kids doing completely different things, work, school, etc.  But she gave us some really great ideas for ways we can incorporate those kinds of experiences into our daily routine and recommended occupational therapy (specifically, Sensory Integration Therapy) for him a couple of times a week. There's a bunch of info unpacked there but here's the summation - it's Disney World for Jack.  I think I also want sensory integration therapy.

We notice at night time after we've played and wrestled for an hour and he has exerted himself and been bumped and tossed and turned all over, he is much more receptive.  His word attempts are clearer.  He can much more easily engage in a story or a song or a snuggle game.  He is just so happy.  In my novel understanding, the principle behind sensory integration therapy in a case like Jack's is that when we feed the proprioceptive "sense of locomotion" need in a child that is understimulated by their environment, he/she can engage more readily in other activities, ie, listen to a story, put together a puzzle, participate in word play.  All children have this need to a degree.  Some kiddos with autism experience it to a great extent and it can interfere with their ability to concentrate, play, comprehend, follow instructions, solve problems, etc.  It's also not something they're likely to just get over. We're beginning to understand it as a physiologic need that has to be met and trying to figure out ways to incorporate more of it during the transitions of the day.

And the biggest update is that Jack Jack will begin preschool in May, and continue into the summer.  I am beyond excited about all the structure of the classroom and the learning opportunities that await.  I think it will be so good for him.  We just need to get through our IEP meeting in March and start laying out the logistics for what the day is going to look like.  I would love your prayers for wisdom for us as we start that process.  I'm nervous about it.  It feels overwhelming and we don't know what we don't know yet.  I do feel confident that God has given us so many wonderful people in our lives who love Jack and are looking out for his very best, and we are leaning on all of you.

And finally, thanks for your continued support.  Thanks for asking about him.  Thanks for all the ways you give us practical help when things are rough.  Every time we are at a low you come to our rescue and we see a reflection of Jesus.  I could never say just how grateful and how indebted we are to you. Because of the ways you extend your love into our lives, I find the prayers that spill out lately sounding a lot less like: "Oh God, when when is it going to get better?" to a lot more like: "Oh God, if it never gets better than this, thank you."  What a gift we have in our son, all the things he is teaching us (elaborate blog post on this topic by AJ to follow), and what a gift we have in the friends and family around us.  Jesus, we are more aware than ever that everything we have has you in it.