Pitter Patter

One of the things I love about our house is the overhang over the garage.  While hard to explain, it allows me to store all kinds of crap  place our gliding bench and chair outside and utilize them even when the weather isn't the greatest.  Before AJ came into our lives, I often sat on the bench and read a book or chatted on the phone. Now, we use the bench for things like eating popsicles, watching Daddy grill, or just sitting outside on a nice day. 

A few weeks ago we had a huge rainfall during an afternoon.  Well, we all know how my brain works. Rain?  Opportunity. Last year AJ experienced and HEARD rain for the first time at night.  This time, it was a bit different.  While we sat under the overhang, we listened to the sound of the rain and... 

Watching the rain fall on our feet:

Out came the sun:

And we played in the rain:

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.

Mish Mosh

So...again.  Another blog absence.  'Sigh'

While I don't have time to give the whole scoop right now, here's a taste of the past few weeks:

-No AG Bell Scholarship
-New car
-Meet w/school team to pow-wow pre-IEP
-Make decisions for AJ's summer re: auditory & speech skills
-AJ's IEP
-AJ vertigo
-My mom and I plant a garden
-To where orthotics or to not where orthotics
-AJ gains weight but the GI still isn't happy but is sorta happy
-Weekend getaway gone wrong
-Jeremy and I take a trip to the ER
-Jeremy's brain gets all funky and we try to figure it out
-School field trip
-AJ's 4th Birthday Party
-AJ's 2nd cochlear implant activation (left ear)
-AJ's last day of school

Which brings me to today.  Our first day of summer vacation.  Although, we're not viewing it as a vacation.  Soon...we'll be covering the events above.

What a Treat

Yesterday I went out on a limb and offered the box of dog treats to AJ.  No, not to eat.  He promptly stuck his hand in, took out one treat, and handed it to Rocky, our German Shepherd.  After initial shock and awe, followed by loads of praise, I offered the box again.  He took out another bone and gave it to Sunny, our yellow lab.  My initial thought was that AJ would put the bone to his own mouth.  No.  He knew the objects purpose.

Rocky, is uber gentle.  I mean if you say the words "gentle" he won't take it.and he'll go lay down.  He's a shep, but thinks he's a puppy and doesn't know he's suppose to host the all the stigmas of shepherds.  He's my gentle giant.  Now Sunny.  He's not vicious either, he's just a bit excited that he's getting treats.  And, sometimes I think he thinks he's getting the last treat ever in the whole wide world.  But with AJ, he was great.  Something about our giant dogs and their precious little boy. 

Today, AJ picked up Rocky's frisbee and gave it to him.  No prompts or anything by me.  We were standing by the door and he just picked it up and gave it to him. Another round of shock, awe, and praise. Rocky is a frisbee freak, so this thrills him to no end.  I give it a day until Rocky is running around behind AJ trying to get him to throw the frisbee.  Throwing is one of AJ's goals @ school...perhaps this may work for both parties.

We followd the inpromptu frisbee giving with a few verbal prompts.  "AJ, give it to Rocky."  To which he did.  No pointing, no visual cues.  Just my voice...and a sweet pointy-eared dog staring directly at him channeling " frisbee" through his eyes. 

I took it one step further and asked AJ to pet Rocky.  He took a step toward Rocky put his little hand on his neck and pushed in a little.  Amazing. 

I purposely did not "model" these activities.  I wanted to truly see what AJ understands on his own.  The dogs have been here since he came home, so they certainly aren't foreign to him.  He knows they are large, take up a lot of space on the floor, and that when they bark, someone is at the door.  If they get in his way, he climbs over them or pushes them out of the way.  Somehow, the dogs are just fine with that, which boggles my mind.  AJ sometimes kneeds Sunny's back like a cat does to your lap.  And he just lays there.  {Sunny's coat also happens to be a great sensory experience for AJ's legs and feet} Although they've been around, AJ hasn't "sought" them out much.  Until now.

Rocky came in the room a bit ago and I asked AJ, "Where's Rocky?"  He stuck out his arm and reached for Rocky.  Today, when I gave him a treat for the dogs, he whipped his head around to look for them. The amount of eye contact he's giving them is amazing.  He's looking to find them, them watching them as they retrieve their treat from his hand.

That, my friends, is called gigundo progress.  And yes, in my dictionary gigundo is a word.

Today: I am proud of all of my boys.

 

Post-Op Report

AJ's surgery went extremely well last Wednesday.  They rolled him in at 12:20 and his surgeon came up to chat with us at 3:15.  They got GREAT responses when they tested the device in the OR.  This is amazing considering there usually isn't anything "great" about the left side of AJ's body.

He did much better in recovery and was still snoozin' when we rolled him up to his penthouse suite.  AJ's room was located in the new West Tower at Children's Hospital of Wisconsin.  It.was.awesome.  The floor was bright and cheery-it didn't look like a hospital at all.  The rooms had 2 flat screen tv's, one for the patient, one for the parents.  The couch folded out into a double bed for parents to stay over and all rooms had wireless internet.  There was a family room, which was a place to hang if you needed a break but still wanted to be on the floor.  There was a playroom and a nutrition room.  A whole room stocked with goodies for the kiddies while they were in the hospital. Someone REALLY thought this through-which us as parents truly appreciated.

The staff, as always, was INCREDIBLE.  With Jeremy being an RN, we form this odd relationship with the staff.  Odd but good.  I think of all, the night nurse was our favorite. 

We had an awesome view of Wisconsin Avenue.  While AJ played a rousing game of hold me standing, hold me in the recliner, give me medicine, give me a popsicle, hold me while I sleep, put me in bed to sleep...Jer and I took turns comforting AJ and giving the other a break.  Breaks included, the baseball game, my New Moon DVD (it was very relaxing actually), and posting updates to family and friends via Internet.

AJ woke up from his longest nap (2-6am) and decided to pull down his dressing.  YEAH.  That was fun.  The resident ENT replaced it with a different type of dressing, which had adjustable velcro...that one was even easier to take off.  He thought he was feeling better and went a bit overboard, so after another round of anti-nausea meds and a nice long nap, he woke up to the AJ we all know and love.  He snatched (really he did) his toothbrush from the tray and demanded his sausage, along with signing "eat".  Ok then.  He sat up in bed and watched cartoons.  We left at 10:30am the day after surgery.

I'm still in disbelief he's bilateral.  Really, there's another piece in there?  Hm.  Come June 8th I'm sure I'll be singing a different tune.  I did have a moment in a restaurant today: It wasn't particularly loud, but loud enough.  I wished for a 2nd implant, so that he would be able to hear us in noise, then realized he has one!  A little bit of a brain fart turned into a wonderful epiphany!  We put a new ticker on top of the blog to countdown the days until his 2nd CI activation.

AJ's doing very well. His incision is healing incredibly well and he was off pain meds the 2nd day after surgery.I've been a bit obsessed with his incision, as the first surgery it was much larger than what I was expecting.  This one is smaller and healing at a record pace! We see the surgeon for a post-op visit on Tuesday.

A big thank you to our visitors while AJ was in the hospital!  Both of our Mom's stayed all day with us-which was a great support for Jeremy and I.  AJ's teachers came and brought get-well cards from his friends at school...SO CUTE!  AJ's audiologists came up and visited with us. Pea's Mom came...and brought me Edward!  I mean...she brought AJ a Brewer's blankie, a much needed Starbucks for me, and a card with Edward on it :)  Thank you to everyone's prayers, well wishes, and positive thoughts!  We feel the love people!!!!

I have SO MUCH to update. My poor blog has been neglected. It will have to wait another week or so. AJ's IEP is this Friday, so we're focusing on that. Until then, here's a photo of our little man from today. He's doing great!

Twas the Night Before Surgery...Again

There is simply not enough time to backtrack and explain the last few weeks, or months, or whatever time period has lapsed since my last "meaty" post. 

In short, AJ's 2nd cochlear implant surgery/device (left ear) was approved in record time.  Two weeks!  Not only that, it was approved by our primary and secondary insurances, which was a huge surprise and a HUGE blessing. 

AJ's surgery is tomorrow.  Another surprise.  We were scheduled much earlier than we had expected.  Everything has happened at a very rapid pace, which is good...yet crazy!.  Jer and I feel like we are riding the American Eagle rollercoaster at Great America...holding on only with our hands on the back of the cars, hanging on for dear life.  Rickity, unpredictable, unstoppable mixed with one hell of a rush.

AJ's annual IEP is next week.  No pressure, right?  Trying to focus on the both things has been challenging, but we're doing our best. 

I just watched the video we made from AJ's 1st cochlear implant surgery.  Amazing.  He's grown into such a little boy, such a little man.  A little man who recently (the last few days) finally decided to communicate with us.  A little man who continues to defy the odds.  We are so proud of him. 

AJ's activation of this ear will be on June 8th (our 9th wedding anniversary).  Having bilateral implants will give him the opportunity to localize sound (stand on the curb and tell which direct a car is coming from) and to hear in noise (he can't hear jack in a noisy restaurant).  We'll have double the equipment.  A double critter clip.  Double the audiological appointments.  Double the miracle of our deaf son being able to hear.

Tomorrow will happen.  We will load up, drive to the hospital with the Grandmas following us.   We'll check-in, put on the silly ridiculously tiny hospital gown, and ooh and ahh at the blood pressure/PulseOx machine with its fun red lights.  We'll give him the joy juice and walk him down to surgery holding.  We'll mark his left ear and kiss him as we hand him to the OR nurse who no doubt, will probably be the same one he's had everytime he's been there.  We'll know he's in good hands and fill our tummies with breakfast, as we probably won't eat again until late at night.  We'll sit in the cafe until I have that "feeling" that its time to head back up the dreary, very non-comforting waiting room.  We'll do what we do because....thats what we do. 

How's that for simple. 

We'll let you know how it goes...please keep AJ in your thoughts and prayers tomorrow.

Monsters

Here's what we did at home for AJ's preschool class theme:

Monsters

+ Read Go Away Big Green Monster and worked on this:

"AJ, where does his nose go?"

I found a template for the head and facial features and cut them out of felt.  I printed a coloring sheet of the face, colored it, laminated it, and we used it as a reference.

+ Monster Pancakes
Make pancake batter
Use food coloring to make it blue
Pour batter for 1 pancake into pan, place mini chocolate chips in 2 small bunches to make "eyes", then flip your pancake
Using sm/lg gingerbread men cookie cutters, cut out your "monsters"
Trim the top of the monsters head, arms, and feet...VOILA-FRANKENSTEIN!

+"Monster Mash"
Smashed apples with green food coloring while we listened to the song "Monster Mash"

+Monster Dinner {its hard to see, but its a casserole with a monster face made out of bacon}

+Walked around in our monster shoes

+Colored pictures of monsters (Monsters Inc and Cookie Monster):
You can find printable coloring pages of Disney characters and more HERE.
You can find Sesame Street coloring pages HERE.

I had the great idea to make a cookie monster out of a styrofoam takeout container.  The idea just did NOT work.  Here's a photo I took before we embarked on this disaster.

I wanted some of that furry fabric-like they have those crazy neon furry hats at party stores?  No blue furry fabric or hats to be found.  I settled on blue felt, but it just.did.not.work.  The only thing that looked cute was the googly eyes we glued on...and the fact that there were mini chocolate chip cookies inside the container (we made his mouth where the container opens so it looked like he was eating cookies).  See, some of my best ideas just don't pan out.

Why There?

Why There?

Well, after a horrid and short experience with domestic adoption, Jeremy and I chose International Adoption.

We chose there, being Guatemala, for several reasons:

1) The children were coming home under 1 year of age (ate the time we applied)

2) They only required one trip

3) The trip was only a few days, compared to a few weeks

4) Guatemala was just a few hours by plane

5) The children were with foster mothers who were privately paid by the adoption attorneys, or they were in orphanges privately owned and operated by adoption attorneys or church groups.  The government had their hands essentially "out of it", which meant better care for the children (I use this last phrase loosely).

Guatemala is an absolutely gorgeous country.  The traffic in Guatemala city was insane.  I wouldn't want to be that guy standing at what looked like an 8-way intersection blowing a whistle.  I can still hear the sound of fresh rain and the loud buses that would pass our hotel on their daily route.  I remember sitting on the upper front porch of our hotel and feeling like the world was just passing us by.  It was a slower, more relaxed pace. 

We were leary of Russia and most other European countries for multiple reasons.  I had once heard a story (from a reliable source) that a teenage girl adopted from Russia had cut herself multiple times and held her adoptive mother at knife point.  Um, no thank you.  China's wait was too long and adoptions at the time were halted.  Romania had just closed.  Vietnam had just opened up again only to close several weeks later due to kidnappings.  It was insane.  Roll the dice, pick a place.  Pick a child.  Pick your future.

We though Guatemala was the safest as far as the health & mental health of a child.  The children were coming home generally healthy and adjusting well.  With the children coming home earlier in life, adjust was a bit easier.  Being in foster homes and private orphanges meant they were loved and cared for better than a typical government institution. 

This story about this adoptive Mom returning her child is disturbing to me.  It makes me sad to say that adoption is sometimes, not all flowers and roses.  Especially when you are told to be realistic in your process, yet reassured a hundred bajillion times that things will be just fine. While our situations are grossly different, there is a common thread.  I think what this adoptive mom did was inhumane, and sets a horrible example for the adoptive parent.  But on the other hand, to some tiny little extent, I get what she is trying to say.  While I don't think she went about it the right away AT ALL, she clearly feels misled. 

I could write an entire book on how the adoption world needs to be revamped and reworked.  Most of all, the red tape needs to be removed.  Why do you think these children have mental issues?  Part of the reason is the process takes so freakin' long!!  Adoption is, in most cases, a last chance to become a parent.  Often, the decision comes fresh from failed fertility treatments or other issues. The decision is not made lightly, and your dreams are set high, period.  You expect, what you expect, and thats that.  I could go on, and on, and on....

**Off my soapbox now**

Out for a Stroll

The other day I was driving through our old neighborhood.  It is essentially where Jeremy and I began our life together.  We lived there, got married there, you get the picture.  Our time there flashed through my head as I drove down the familiar streets and stopped in front of our old house. For some reason or another, we haven't been in the area in months.  Which is odd, since it is literally 7 minutes down the road. 

As I drove past the baseball field at the highschool I saw 1, then 2, then 3, then 4 boys out for a stroll with their Mom...who was, as all Mom's do, bringing up the rear and letting the boys do there thing.  At first I didn't realize she was with them.  As my eyes immediately jumped from boy to boy, walking, wheelchair, walking, wheelchair.  I suddenly felt my heart race and found myself quite distracted from my task at hand (driving).  While I wasn't gwaking, I certainly was looking. 

I have no idea if all 4 were her kiddos.  Although they did look alike and all looked to be about 7 years of age (just a guessimate).  Here was this Mom, just walking along.  The kids walking and racing their chairs between each other, laughing and giggling.  Such beauty.  Such normalcy. 

I felt the sudden urge to pull over, jump out of my car, and ask her a million questions.  I wanted to know that question most Special Needs Mom's cringe over...How do you do it?  Although, when I ask it, I think it has a totally different meaning than when a strangers asks me.  (My answer is, by the way, I don't know, we just do)  I wanted to know how this beauty that was before my eyes was created.  I wanted to ask here their stories (because there is always a story) and how far they have come from X,Y, and Z.  I wanted to talk to a woman who is in the same club that I am.  A Mom who just KNOWS. 

For me, being a Special Needs Mom is often isolating and incredibly lonely.  Don't get me wrong, its not all bad, but it is what it is. It is amazing to me how there are so many women on my kickball team, and I don't even know it.  Its a secret club, that really, needs absolutely no words.  We are instantly bonded by our differences and similarities.  Another stroke of beauty if you ask me.

I thought about those boys for the rest of that day.  I thought about how that beauty could be possible with a brother or sister for AJ and how sad and frustrated I become when thinking about expanding our family. I thought about how absolutely amazing I was in the right place at the right time to see such beauty. How I should have gotten out and talked to that Mom and her boys.  We could have shared beautiful stories and I would have left with a feeling of peace in my heart.  How do I know?  I always do when I meet or talk to another SN Mom.  Its just the way it is. 

When I'm in the area again, I know I will be looking for that scene of beauty.  Maybe, just maybe, I'll pull over this time...

Thurday's Book Corner

I bought this book a few months ago. I cannot, for the life of me, remember how I found out about it.  I started reading the other night and have found myself highlighting and writing notes in the margin.  I do not write in books, unless I have to (like in college) or unless its really good. 

THIS.BOOK.ROCKS.

You can read about it HERE from the book's website.  A brief summary of its contents is located on the books website as well. 

Its candid.  Reality.  Most importantly, its something Jeremy and I can relate to. Often our conversations consist of nothing but AJ.  Me to Jer: How was your day? Jer: Good.  Jer: How was AJ's day?  Me: Well, blah blah blah blah blah....  Every move you make revolves around this littler person.  Go ahead.  Tell me it shouldn't be.  Then I'll tell you to walk our journey and then see how you prioritze your life.

Married with a Special Needs Child Is Different Than Being Married with a Typical Child.  Not that I am downplaying the everyday stressers of being a parent.  I am most certainly not.  But remember what it was like for the first 8 weeks of your baby's life?  Constantly "ON"?  That's what this is like.  The stress doesn't just go away when the kids get older, in most cases, it never goes away. 

This book is so awesome, I don't even have words.  It has mini-stories and tidbits from REAL SN parents and is written by two fabulous people who, God Bless Them, chose to be bold and candid with this book. It talks about the grief, the anger, the self-pity that turns to self-compassion, ways you can improve your relationship, stay connected, and most of all, it spells out the REALITY of having a special needs child. I would highly recommend this book to other SN parents, and to those who know other SN parents, or want to know the truth. 

Just because your child is doing "ok" or even thriving, doesn't mean your relationship with your spouse is ok too.  No people, I'm not sending up red flairs or trying to tell anyone anything, so relax.  What I am saying is that your child becomes your priority in such an intense, raw way, its hard to explain . Part of what makes this journey difficult is that it is the road less traveled.  Less and less things relatable to those around us. 

It often takes years to adjust to having a special needs child.  I didn't know that...until I read this book.  I thought we were the only parents on the planet that still had moments.  While there is an incredible amount of stress, it doesn't make us love AJ any less, by any means.  The "Us" gets lost in the "He".  You doggie paddle your way to the surface and do the best you can.  Its the nature of the beast, I think.

I had a hard time with a therapist who had worked with AJ in the past.  It angered me that this therapist could tell me her experience with children like AJ in her line of work and sit there and pretend like she knew how I was feeling, when I knew darn well she had no idea.  She went home to her kids that night, who were all able to say "Hi Mom" and did all the typical things that families do. 

Eventually I got past this, but it is a prime example of how you are constantly reminded that your journey is different.  Yes, yes.  Everyone is an individual, we should all have goals and achievements to strive for and all of our journeys should be different.  But come on.  Our world is full of conformity.  No one wants to be the last kid when your are picking teams for kickball.  We all want to be included and understood. 

I ordered my book from amazon.com.  The other neat thing on Amazon is you can take a peak inside the book HERE. 

I think I like this new "weekly-themed" post. 

Did I mention this book is amazing?!