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...