Constant Learning

This summer has so far been the most "normal" summer we've ever experienced.  It's full of popsicles and sprinkler fun, sandy feet and sunscreen.  It is everything I wanted in those early years with AJ.

Those days when we were waking up and doing back-to-back-to-back therapies.  One summer we ventured outside for his PT session.  I just about passed out.  He was ready to use his skills in a natural environment outside the house.  I whined about the therapies, the work, the constant "do this, do this, do this".  Summer was hard, with photos of other people's children doing those "normal" things while I was fighting insurances and scheduling constant therapy sessions.  

I'm glad we had that period of time.  What a labor of love.  

When his school team first told me he would not have ESY this year, I thought they were joking.  Indeed, he is attending ESY (things always change in AJ Land).  However, he's remembering verbal prompts such as "let's go to school", "let's go bye-bye", and the ever famous "where are mommy's shoes?".  He shows me a mega-killowatt smile when I pull up school on his iPad.  And when his short session of ESY is over, he has no problem leaving.  

He's quicker to adapt to changing environments and schedules.  This-is a huge step.  HUGE.  

It is a very, very strange feeling to not be running to therapies constantly.  Still.  And we've been out of the constant therapy world for over a year now.  He has done so well, and made so much progress, much due to the intense bouts we did when he was younger.

Never fear we are still in the constant learning phase. Mostly, I find we are working on social and feeding skills.  AJ is perfectly capable of using a fork, spoon, or spork with finesse.  Well, as much finesse as a child can have at his age. Despite his learned skill, we are back to battling utensil use.  We're also working on not just grabbing other people's food, or plates, and not dumping our cups of liquid.  I swear this kid has go-go-gadget arms.  Holy cats.  

Social wise, we are working on reminding him of the proper way to greet someone.  His preferred method currently consists of pulling your hair, grabbing your glasses, and laughing hysterically.  When he gets excited or feels uncomfortable or doesn't know what is expected of him, these behaviors come out.  In the last few weeks I've had two little girls come up to me and tell me "he pinched me".  My heart sinks and I say, "I'm sorry.  He really didn't mean it."  We are so blessed and fortunate to be an example of acceptance that this type of things sends me into a sad panic.  I start to worry if that kiddo told her parents and how they will react.  And then what do I say to them? I don't want to make excuses for AJ, but what do I say? I really struggle with this piece of teaching my child manners. It is such a hard place to be with not completely being sure as to what he understands.  

And then he does things like grabbing an apple and starts munching on it.  Holy use of all the feeding skills we've been working on.  He's gaining social skills by interaction with his puppy.  Constant learning, constant change.

We are constantly working on helping AJ learn.  And this summer, we're doing it with popsicles and fun.  It doesn't get much better than that.

Holding Pattern

AJ finished summer school today.  When did summer fly by, and why didn't I notice?  He did extremely well, with all his sessions, he only had one horrible day.  The rest of the days, he was thrilled to be there.  I'm planning on driving by his school a lot in the next few weeks, just to keep his brain connected to the place.  His visual memory is amazing, so I have no doubt he'll recognize it when we pull-up, or even play on the playground.

I'm nervous as to how he's going to react to the new house.  He's been there before, but I'm really hoping he adjusts well.  It will be a lot of change for him.  I'm also nervous as to what I'm going to do with him for 6 weeks before school starts.  Yikes.  Did I mention how much he loves school?

I'm frustrated about AJ's recent approach to potty training.  And I'm nervous that school, or someone or something, may ask us to stop potty training him.  We've been at this over 2 years.  And I'm exhausted.  2 years!  For a while, he totally had pee'ing down.  Let's not even talk about poop. As much as we try to ask if he has to go potty, and try to remember when he went last, the recent chaos around here has not helped the 'schedule'.  What is so frustrating is that he has the control, whereas many children with CP don't.  He can "feel it" just fine!   I've tried, several times to teach him how to pee standing up, and he just doesn't understand the concept.  Which is fine for now, we'll still have him sit and go, but that creates more dependence on his aide at school.  I don't know.  Its an issue, and I'm frustrated. Period.

I've purchased, labeled, and placed all of his school supplies in his backpack.  Yep, I'm that Mom.  I feel better knowing I won't have to run out and try to find 12 blasted glue sticks at the end of August when everyone is sold out of all the required school supplies.  No doubt there will be something his teachers throw on the list that wasn't there last week when I printed it, but I'd rather run out and get one thing in the midst of moving rather than the whole list.  Besides, my label maker makes me happy.

As with all things Heidi & Jeremy, this moving extravaganza has turned into chaos.  We were supposed to close yesterday. Yes, yesterday.  We are hoping for next week.  All of that calmness and "I'm not overwhelmed or panicking" I wrote about last week, is now present.  I just want it all to be done and over with.  We are stuck in a holding pattern.  Nothing to do be sit around and wait, while packing some last minute things.  Everything as planned, is now haywire.  Which, in theory, makes me feel incredibly dumb.  Because I truly should know better.  There is a fine line between the optimist and the pessimist.  Jeremy and I are both on that line.  Not purposely waiting for that shoe to drop, but given our past experiences, we usually assume it will. With moving, we were silly enough to think it would go somewhat well.  The best laid plans....

Sweet Moments

Yesterday was a day which usually lives only in dreams.

As he does every morning, AJ flashed me the biggest grin in the history of grins when I opened the door to his bedroom.  This moment, each day, is by far my favorite moment of the day. I drove AJ to summer school enjoying the sunshine, the cool breeze, and my recent iTunes uploads.  After dropping him off, I ran to the store to purchase Jeremy some new duds for work.  I picked up a very happy boy from school and we came home for a snack.  Back in the car we went, with AJ's smile in full force.

We drove to the post office, where AJ charmed the hearts of every single person in the building. Our next stop was the grocery store, where he proved he is officially too big for the child seat.  He did well as I encouraged him to "hold on to the cart" as I was packing the groceries.  We stopped at his favorite Chinese place for his favorite fried rice, and came home to eat lunch with, you guessed it, Mr. Smiley.

He laid down for a nap while I packed more boxes and did homework.

After waking up from his nap, AJ was delighted to discover we were once again leaving.  As we walked up the gravel road to the horse arena, his little eyes lit up like diamonds and he squealed in delight.  "Horses! Horses!", I could feel him saying from his heart.  AJ enjoyed every second of his session and had his own giggle-fest when the horse trotted.  He left cool, calm, and collected.

When we arrived home, AJ fully cooperated in the second favorite part of my day.  He saw his Dad, and erupted with a huge squeal of excitment as he ran toward his Daddy.  It is, quite honestly, the sweetest moment I get to witness between my two boys.

Days like this fill me with positivity.  Hope. And a taste of the normal.  While technically, summer school and hippotherapy are educational and therapy....for once, it didn't feel that way.  I cannot express how refreshing it was.

Monday was our telephone hearing regarding our appeals for the denial of AJ's physical and speech therapy.  In preparation  for the hearing, I spoke with AJ's PT.  She listed all of the things we manage for AJ, and said, "You need to ask them when you get time to be AJ's Mom."  That sentence has been on my mind all week.  This is perhaps, the very reason, why Hard Moments are the way they are.  While I am AJ's Mom, I am all too often wearing multiple hats at the same time.  The Mom hat seems to be less worn than those that are seasonal.

Yesterday was a day full of sweet moments.  Moments where I felt like just a Mom.

Cardinal Cuteness

Getting his new duds.

AJ's Buddy, AJ, Daddy

 Shaking hands with the coach.

Running home.

 What is this thing on my hand?  

{And why is it pink?}

Snack Time.

Throwing.

I'm Done.

 Hiya Mom!

AJ Gets His Polka On

AJ attended his first festival: Polish Fest.  If you are familiar with the Milwaukee Area, the Henry Maier Festival Grounds host the biggest music festival in the world, Summerfest, as well as many other ethnic festivals throughout the summer.  We had a blast, and AJ did extremely with the crowd noise and music with both his CIs on.  You could definitely tell the difference when the "new" one would fall off and when you'd put it back on. 

*Relax, he didn't get anywhere near the beer. 

He was just checkin' it out.

Snowcone!

Polka with Daddy!

Polish Connection:

The band AJ LOVED!

Serious conversation?

We ended the day at the splash pad!

Even though the water was ice cold, it was still fun.

S&T

Scholarship:
I'm sure you remember that I mentioned we applied for a scholarship to attend the AG Bell Biennial Convention in Orlando this year. 

Well, we didn't get the scholarship.  They had around 65 families apply and gave 5 full scholarships/1 half scholarship.  We were really bummed.  Ok, beyond bummed.  I was also kicking myself for not understanding what a great opportunity we had back in 2008, when the convention was right here in Milwaukee.  Hopefully, we will be able to attend the 2012 convention without relying on a scholarship.

School:
We met with AJ's teacher and SLP at school a few days after his surgery.  Nothing like crunching everything together, right?  Anyhow, our purpose was to pow-wow before AJ's actual IEP meeting, which was the following Friday.  We got quite a bit accomplished!  We reviewed AJ's (then) current IEP (Individualized Education Plan) and both Jeremy and I were both pleasantly surprised as to how many of the goals he had already met.  He had more "met" or "emerging" than "not met" goals, which was very encouraging.  I hadn't looked at his IEP in quite a while.  It was a mirror with a much different reflection.  AJ had progressed.  There was no denying that.  We discussed what we were going to "pitch" to our home school district about schedule, and his current needs, etc. 

AJ's IEP meeting that following week went OUTSTANDINGLY WELL.  It lasted 1 hour and 15 minutes...which I think is a record.  It was smooth as silk.  The principal sat in on part of our meeting, which was interesting.  He totally reminds me of my own grade school principal.  It gives me warm fuzzies that everyone in the building seems to know who my little man is and when his own principal cheers him on in the hallway...that is special. 

AJ will again be attending Lowell for the 2010-2011 school year.  YAY!  He will go a full five days, with 3 half days, and 2 extended days.  Which means two days he'll be eating lunch in the lunch room with his peers.  That just screams "boy" instead of "toddler", doesn't it?  We are pleased with his new goals, some carryover from the last IEP, but most of them are new.  He will also be participating in a special PE program, which is super exciting. 

AJ's last day of school was last Wednesday.  I am so sad the school year is over.  The year ended with a field trip to the zoo, and on the last day, a slide show and picnic at the park.  I really feel like we're a little preschool family.  All the parents know one another, and support each other's child.  The staff for the preschool program...I don't have words.  Really.  They are all amazing and we are so blessed to have them help AJ on his educational journey.

All of the kids have grown over the year.  It was truly amazing to watch them all grow as kids and as learners.  I truly enjoyed my time volunteering this year.  I've been asked to return as a volunteer, which makes me very excited!!  We'll start school again in September.

While AJ is technically out of school, he's not really on vacation.  We struggled and struggled with how to best support AJ over the summer, especially in the area of speech/auditory skills/language/communication.  While everything else seems to be chugging along, these seem to be sitting on the tracks.  I will say that AJ had an explosion of signs that emerged in late April/early May which made all of us ectastic! 

Last but not least, AJ qualified for ESY (Extended School Year) through the Waukesha School District. He will attend two days a week, for about an hour, from late June through July.

Therapy:AJ will be working with the AVT (Auditory Verbal Therapist) at the Center for Communication, Hearing, and Deafness over the summer.  We will see the AVT once a week to work on Auditory Skills Development and hopefully he'll make some wicked progress.  I'll write more about this later.

In addition, AJ will be attending a tumbling class once a week, feeding therapy once a week, occupational therapy once a week, and physical therapy once a month.  AJ has not had PT since March, due to insurance thinking he's doing too well.  Yeah.  How about that?  His PT submitted for summer sessions only.  We thought it would be a slam dunk, no problem. They approved, with modifications...8 visits from now until November.  We can either fight it or take it.  We've chosen to take it.  Something is better than nothing, right?

Not a summer vacation...but its what AJ needs.