Kindergarten

         After many meetings, and a lot of prayer, we were able to enroll Jack into a collaborative Kindergarten program in the Green Bay school district.  Only one school in the district runs this program, but they referred to it as their 'cadillac' program.  It's designed so that two kindergarten classrooms are connected by a third room in between.  The classrooms are staffed by kindergarten teachers and special-ed aides, and the middle room is staffed by a full-time early childhood teacher.  They are regular education classrooms, but each room has 5-6 kids similar to Jack, who can get the attention they need but still be able to learn at the appropriate age level.  I.AM.SUPER.SUPER.SUPER.EXCITED!!!  This sounds perfect for Jack!  They even agreed to start him at 2 1/2 hours for the first six weeks, and then slowly increase his hours over the school year -and the additional time is completely dependent on how he is handling everything.  There is something very settling about this for me, too.  It has been an entire year that Tony and I have been wondering and waiting to see how school was going to play out for Jack.  On one hand, he doesn't need to be stuck back in a special-ed classroom.  He wouldn't thrive that way.  On the flip-side, he struggles in classroom size settings on his own.  I had never heard of this program, but as soon as it was mentioned to me I knew it was a good fit for Jack.  It sounds very discreet to me, which I think is important.  What I mean is: the aides in the classrooms help all of the kids, and the middle room is functional for both classrooms.  Basically, the kindergarten classrooms are self-contained; they have everything they need in this three room system.  There will be no calling Jack out of class, he will not have an aide with him, and he won't have to feel different in any way -but he will still get the extra attention he needs!  I really believe this is a gift from God to Jack, and to the rest of our family as well.  He has worked so hard, and changed so much in the last year, and I'm so excited for him!!

Big Week

This week is a big week for Jack!  We have three appointments with our school district this week, two are evaluations and one is an IEP.  Please pray for us and for Jack, that we will have a productive meeting and that Jack will be placed where he needs to be.  My impression from speaking with them is that they have one option, which Jack is not ready for yet.

Jack is still growing like crazy!!  Every few weeks he seems to turn a new corner, so to speak.  What's been awesome lately is that he has started to initiate affection.  He has always loved being hugged and kissed, but only in the last week or two has he ever initiated it.  Every night now, he gives me a hug and a kiss on the cheek, something I'm definitely enjoying!! Sometimes these changes are hard to define and quantify, but a change like that is a sign to me that he has been freed up a lot.  Thank you all for being supportive, I hope that you can all see how much Jack has grown soon!

Choices!!

We've had quite the interesting few weeks with Jack.  We are continuing with his habit "potty" training, but had to revamp it a little bit.  The changes seem to be working out well, thankfully!  Now, whenever he fulfills his requirements, he gets to pick a reward from a special box.  There are cards in the box with different rewards on them, such as a cup of soda, outside time, Wii time, etc.  My impression is that he responds well to it because he doesn't know what he's going to get each time, and it's always different!  Overall, he is struggling with it and progressing at the same time.  I can tell that he still wants to fight it, and we've had a few rather telling moments that speak to that.  However, he's made progress too, and is more aware of what's going on.  He is definitely maturing, and with that I can sense that he is opening up to the idea of change!  

Our big struggle right now is finding the right school for him this fall.  We opted out of 4K last year, and started the intensive therapy instead -but it's definitely time for him to start school.  Both his pediatrician and behavioral doctor suggested that he would be better off in 4K this fall, instead of kindergarten.  Tony and I can sense that as parents too, but we're having a hard time making that work.  The public school does not want to enroll a 5 year old in the 4K program, and the school that will enroll him in one, is a private school and requires complete potty training before they will take him.  What a bind!!  Please pray for us, that we make a good choice for him, and that he relaxes about potty training too.  Thank you so much for all of your support!!

Meanwhile, Jack has been earning military stickers to put up in the bathroom.  He created a battle scene with them a couple of days ago, and can stand there and talk about all of the vehicles and what they're doing.  It's fantastic to listen to him be creative, what a change!!

Updates Pt. 2

It's been awhile ~ I know!!  We've had a lot of changes take place lately - mostly good ones, thankfully!  We finally transitioned through all of the therapists that needed to leave and all of the new ones filling those empty spots.  Jack lost 3 out of 4 line therapists from his original team, which was extremely frustrating at the time, but has turned out really well.  His new therapists are FANTASTIC!!  They love him, connect to him, and are just what he needed.  One of them works with older people affected by autism, and has seen what this kind of early intervention can do for people; for her, this is serious, life-altering work.  Another new one has a pet pig, which Jack loves to pieces.  He even works for the reward of watching videos of it from the therapist's phone.  There is even talk of making videos with the pig to use for potty-training - which is something that Jack will love and connect to.

Speaking of potty training ~

      We finally started!!  The clinic refers to it as 'habit training' and I believe I've seen it called 'interval training'.  It starts out very simple, with Jack just having to sit for 10 seconds once each shift.  Every week the requirements change, and the rewards do as well.  The first week he earned paint for the bathroom, and the second he earned wall stickers.  I took him to Sherwin-Williams to pick out the paint, and to show him some pictures of themes that he could pick from.  He had been talking about fish on the walls for weeks, so that's what I thought he'd pick.  But no.  He went for Army tanks and planes.  Truthfully, he needed to pick a theme that is exciting for him, so this is good.  But it's definitely not one I'd ever pictured!  Thankfully, the picture had blue/gray paint in the background and not army green!!  

Forever grateful to good friends, two of ours helped us paint the room already.  It's all set for Jack to earn his tanks, planes, and helicopters to put on the walls.  If you think of us, pray for us.  This is a huge undertaking for our family.  The truth is:  I get extremely frustrated because I wasn't able to do this myself.  Our senior therapist says things like, "I've potty trained so many kids, it's crazy!"  And then I wonder who else is out there that had a similar experience.  I don't know of any myself!  But Jack is different.  He's a good different, but he's different.  He needs different things from me than Evan does, and that's ok.

On a positive note:  he's grown like crazy in the last couple of months.  His conversational skills have taken off; his ability to express himself has changed so much that's it hard to remember a time when he wasn't able to do it; he's learned how to get attention appropriately; he even wants to watch tv/computer less - which is an activity that could keep him amused for hours and hours.  Now he wants to know what we're going to be doing all the time.  It's been amazing to watch him change and grow, and I'm super-excited for what's in store for him yet this year!

Updates

Tuesday was an AMAZING day!!  My dad and I took Jack to the cardiologist for his echo cardiogram under the assumption that he was going to start on medication soon (beta blockers and blood pressure meds).  Last year, when he had the same test done, the cardiologist almost prescribed it for him but then decided that he was too young, and too afraid of the doctor's office for it to be effective.  The good news: He does NOT need them this year!!  His aortic root is still mildly dilated, but the percentages haven't changed since last year at all.  His height and weight are around the 75th percentile and his aortic root length is at the 99th percentile.  If it stretches anymore, he will still need it; however, if it stays at the 99 mark as he grows then he won't.  So he still needs to be tested every year, and possibly every six months when he's a teenager, but this is such great news! It also means the cardiologist has a history and baseline, instead of just a snapshot.  I was so surprised and relieved that it has taken me these last 5 days to decompress and talk about it.  It's the first time in over 2 years that I can actually picture Jack as a healthy, active kid.

The other awesome thing that happened Tuesday was Jack's handling of the echo.  He was a little SAINT!  He crawled up on the table himself, talked with the technician about taking pictures of his heart, and then just LAID THERE.  ON THE TABLE.  FOR TWENTY MINUTES.  It was AMAZING!!  In case you're not aware, the first time Jack had an echo done, we had to sedate him.  It was a horrible experience..    which ended with the doctor wrapping Jack in a blanket and sticking the IV in his foot.  He wriggled out of the first 3 tries with myself and 2-3 nurses.  He's very limber (the Marfan's) and could get the IV out even with three people holding him.  I've never heard him scream like that, and I hope I never do again.  The way Jack handled his echo Tuesday is miraculous.  I didn't even have to use the treats and toys I had brought with me, he just watched cartoons the whole time.  Later he said things like, "Mom.  They took a picture of my heart.  Inside me here."   And, "I laid really still on the bed, and mommy is really proud of me."  This is so great for Jack, he's come such a long way!

Thank you so much for praying with us!!

An Ode to Evan

Ok, so it's not an actual ode.  Apparently, there are very strict guidelines for those.  But the thought counts, right?  Sometimes I wonder if Evan gets lost in all of the time we spend taking care of Jack.  I hope that's not true, but I think he needs some recognition.


I love listening to Evan wake up in the morning.  He comments on everything he does.  "I get up.  I go see Mommy.  Play with dog.  Drink milk."  And so on.  


Evan has the best smile EVER!!  And he has the laugh to go with it!


I love the way he curls up with his blanket at night.  He rubs it on his face and knows how to wrap himself in it.  He's like a little bug, all cocooned in his blanket and pillow.


Evan is turning into a pack-rat.  He stores toys in his bed at night, and he taught himself how to carry all of the toys he wants to take out with him.  It's hysterical.


I love how he comes and sits on my lap.  He backs himself up and plants himself right on me.  We both like this arrangement.  Truly.


Evan has the best eyes ever.  When he looks at me, I melt.


I love watching him befriend other children.  He always lights up when he sees kids his age, and I've even seen him put some at ease just by being friendly.


Evan is good little brother, staying downstairs with me when Jack is 'playing' upstairs with his 'friends'.  


He is a beautiful child, full of life and laughter.  I thank God for him.



http://en.wikipedia.org/wiki/Ode

Progress and Little Debbie Stock

We have progress!!  I took Jack to the railroad museum last week, and it was the first time I really saw all of his therapy come together for him.  He walked up to another boy and said, "I like trains!  Do you like trains?  This one over here, this is my favorite train.  Do you have a favorite train?"  He spent the whole hour with this boy!!   Jack even talked with the boy's mom, answering questions that he's always struggled with in the past.  It was amazing, and totally worth all of the things we've been struggling with at home and in therapy.  He even invited this boy to get ice cream with him afterwards; he couldn't come but still, Jack made a friend all on his own!!



Looking for something to invest your hard-earned dollars in?  Go for Little Debbie, or Hostess, since we will be stocking up on it in our home.  I was so tired of all the tantrums that I told Jack he could have a Little Debbie Valentines Cake if he went through a shift without a fit.  He REALLY LIKES those cakes, because he hasn't thrown a fit since!  I hope this is a turning point for him, because with his compliance comes potty training!! I can't wait!!


http://littledebbie.com/products/ValentineVanilla.asp