Choices

There are many times during our journey with AJ where there hasn't been a choice to do something or to not do something.

But then, I think again and really think about how technically, there is a choice in all of things we do with and for AJ.  While I would never think of not giving him his seizure medication, there is (technically) a choice to do so.  There is a choice in taking him to this doctor or this specialist or even to therapy.  I could go on.

The choice for us was made a long time ago.  Give AJ absolute everything and anything he needs.  Period.

Still, we often come under fire for the choices we make outside of AJ.  While it doesn't change our choices or follow through, it often comes as a surprise to us.  AJ is always a part of those other choices in some way or another. We try to find a balance between being AJ's parents and being Jeremy and Heidi.  Sometimes we succeed.  Sometimes fail. We keep trying.

Obtaining my BA has been difficult in recent months.  A funny thing happened when I stopped whining about it and sat down and devised a plan to schedule my time better.  It worked!  I made the choice to earn this degree so I'm going to own it.   Figuring out that I'll be graduating 3 months early has also been a huge motivator.

I'm proud of my sweet husband for not only going for but achieving so many of his own goals.  I ran across some paperwork yesterday from 6 years ago that had written "obtain my Nurse Practitioner" on it.  He's going for it and I'm so very proud of him.  

I have sat on the couch and wallowed.  Pity-party central.  Tears. Fear. Panic. They are paralyzing.  I mean, straight up paralyzing if you allow them to consume you.  It may not show, but I can be a huge fraidy-cat.  Straight up.  While certain experiences with AJ have given me thicker skin, sometimes I'm still sensitive.  Allowing our son's diagnoses to consume us, any more than what they already do consume, is not a choice we are making.  We both need to have something to focus on and enjoy outside of being AJ's parents.

That does not change the fact that we want the best for AJ. This does not mean a fancy house, cars, and all the latest toys. It means planning for his future, as his needs continue to increase.  It means having the ability to hire help when we need it, pay for the therapies and equipment that he's going to need. At the age of 5 AJ is already being denied services.  We are not going to be able to rely solely on what our state or other resources may provide him in the future.  Who knows how long all of these things are going be in existence.  AJ will not thrive on settled or skimping by.  I refuse to put him in some dumpy home when he's older just because that is what the state will pay for.

Bettering ourselves for the sake of ourselves and our son?  That's a smart choice if you ask me.

Silver Lining

Well, yesterday was interesting.  

He has repeated the same pattern that happened last weekend on Tuesday, so I let him sleep until he woke himself and then took him to school.  Yesterday, he was in a deep sleep again when I opened his door.  I gotta say, I'm missing the "beep, beep, beep...vroom, vroom, vrooms" in the morning.  It is so very rare for him to be that deep in sleep at that time in the morning.  

For a solid week we have been talking with AJ's school team about the observation by one the district's special education gurus.  Which was, of course, scheduled for yesterday.  So, I felt it important to wake him.  He did great during breakfast and getting dressed, but was a bit "off" in the car. I figured he was just tired. As I drove up to school he looked like he was drifting off to sleep.  Ok, so he's really tired.  He was wide-eyed when we parked and I dropped him off as usual.

A few minutes after I arrived home the staff called me, describing a seizure.  "...annnnnnnd he just fell asleep," she said.    Ok, let him sleep. I called the neurologist office and waited for a call back.  I drove up to school, honestly, to check on the staff.  I knew if he was sleeping, he'd wake up refreshed.  Sounds insensitive, doesn't it.  Such is the life of a special needs mother-sometimes.

The silver lining lies in these events:
+ Upon arriving at school I popped in to talk to the health room nurse.  I could tell by her body language that what happened did not cause the staff to panic.

+AJ actually having the seizure at school helps the staff recognize symptoms.  

+ While he was sleeping, two of his aides sat on the floor and navigated AJ's iPad, going through things that a typical school day does not allow time for.
+ I had the opportunity to chat about the seizure in detail with his school team.
+ I had the opportunity to sit on the floor and chat with the special education guru for over an hour, with various members of his school  team filtering in and out of our conversation.
+There truly could not have been a better day for the guru to be observing AJ.  

While I certainly would not like to repeat yesterdays, I am thankful for the silver lining.

Who Is That?

With time certainly comes changes.  Yikes.

I spent today with my Mom. While the day was indeed productive, it proved to be mostly a girls day. A much needed girls day.

What I didn't need was to see pictures of myself as a 5th grade cheerleader and 8th grader.  Double yikes.  I had a good laugh and then moved on to photos my mom brought home from her office.  A collage of pictures from my senior year of high school.  

Who IS that girl?  Sure time brings age and the normal,typical changes you experience as you grow and mature.  

But there were things I suddenly missed about myself.  This fresh face was staring back at me.  Sitting on the shore of Lake Michigan ready to take on the world. Full of life, not tragedy.  I looked....Like someone else.  I look in the mirror and don't see one iota of that girl.

Do I want to be 17 again?  God, no.  But there are parts of my personality that seem to have somehow died off.  I'm much too serious.  Most of the time.  No really, ask my husband. He'll tell you.  I'm constantly on edge.  Worrying about whats going to happen next that going to feel like a sabotage attack on my family and our future.  Feeling scared and letting my fear completely consume me.  I can turn a silly situation into a serious tension-filled situation in seconds.  I'm available for parties.  Inquire within.

Don't misunderstand me as having a pity party.  I certainly was not.  I simply recognized some not so great ways of how I've changed.  And in that moment I vowed to change.  

In Which I Am a Super-User

I anxiously picked up AJ's iPad from the UPS delivery center the day after Labor Day last year.  When we opened it, it was a bit overwhelming.  The same thing happened when learning about his cochlear implants and my iPod...in different degrees of course.  Technology has a way of making people nervous.

We spent the rest of September choosing a communication program/app that would work for him.  From October into now we've been building said program. Changes to the program are constant and will never stop.

In November and December we saw AJ really take to the iPad.  He peeks around you to look at the screen to see what's on his agenda next and signs for it.  We've been working with him on using our pointer finger to scroll, swipe, and point on the screen.    We've added pictures to the picture glossary. We've built storyboards (daily routines) and adjusted them A LOT.  AJ has been able to predict his morning routine for long time now, but its so cool to see him "ask" for something.

A few weeks ago I walked into another room after getting him dressed for school and suddenly heard "swing.    swing.     swing.swing.swing.     swing.swing.swing"  and then footsteps.  he had picked up the iPad from his bed, tapped it a million times, obviously, on the swing, and then brought it to me to say, "Mom, I want to swing."  That was the moment that solidified that my child understood the power of his iPad.  That he understood his held power in communicating.

School has given dozens of examples as to how he's using the iPad.  So much so it is now being written into his Individualized Education Plan (IEP).  In addition to that, a brilliant plan has been conceived to train AJ's team on the iPad.  My initial thoughts regarding the staff was to have each of them take it home and explore.  The current plan is so brilliant it makes my heart all a-flutter and stuff.

Our school district's "iPad Guru" is coming to train the staff on AJ's ipad.  While I won't get into too many specifics as to how it is going to work, let me say I'm thrilled to know everyone will be trained congruently.

Enter the "users". I've said before that AJ has a large school team.  11 people.  This makes establishing who needs to know what important.  We'll be identifying the "super-users" and the "users".  In order to do this, we need to figure out who needs to know x,y,z, and who needs to know a,b,c.  For example, does his gym teacher really need to know how to change a storyboard?  Probably not. Do his teachers and aides?  Absolutely.

I've earned the name as the only current "super-user".  Therefore, I am putting together a list of what the staff needs to know. From there I'll break it into the two different user categories.  Rest assure I am not the only person creating a list.  A few of us are and will "cahoots" (get together and talk about it) in the near future.  In the meantime, you'll be happy to know that my list has started with "How to turn the iPad on and off, including use of the swipe "turn off feature".  Things you don't think about until you manually go through and think, "How.do.I.do.this...In.Steps."

I didn't know what I was doing until I sat and played around with the iPad.  Its all through trial and error.
This technology is simply amazing and I'm so glad we were able to supply our little man with a way to speak his mind.  You have no idea.   I chat with Apple at least twice a week and have been in consistent contact with the company that created his communication app.  The support is amazing.

So, its "Super-User" Mom to the rescue, or whatever!

Wednesday's Wisdom

Opportunities to find deeper powers within ourselves 
come when life seems most challenging.
-Joseph Campbell

First Day Back

(Tuesday)

Today was AJ’s first day back at school following Christmas break.  I woke up victorious, having gotten a full night’s sleep for the first time in weeks. AJ chose today as the first day to sleep in the last two weeks.  Each morning we wake to “beep, beep, beep, doo doo doo, doo, spinny thing, vroom vroom”…you get the idea.  Because AJ needs his seizure medication around the same time each morning, there is no more true sleeping in for this family.  Unless… Jer and I are in Hawaii. There was lots of sleeping in there.  Sigh.

Anywho, I had to wake him, which was rather uneventful.  He had a few seizures during breakfast and maybe two more after breakfast-or what I’d call his attempt to be a bird.  His platform swing…wait.  Did I tell you we put it up?  And he loves it?  He does.  The bolt came out of the joist on New Year’s Eve. We’ve had a bit of a sad boy, but then we pull out his ginormous new body ball (yoga ball) and he’s giggly again.  The swing should be up by this evening. 

Moving forward again…usually we swing after getting dressed, as he knows that’s the next thing in our routine.  Sadly I told him no we couldn’t swing and signed broke while I said it was broken.  When saying, “Do you want you ball?”  I received a big smile and manic signing of please occurred.  I love that little guy.

So roll on the ball we did until it was time to go.  He stopped in the middle of the driveway and starred at me whining a bit.  Hm.  Odd.  Lightbulb! He’s got to go potty.  Sure enough, that’s what it was.  This is what makes things so frustrating at times as he knows what in blue blazes is going on and needs a way to tell us.  I know, you say whip out the iPad.  Well, we’re learning quickly that there is no perfect system (other than saying aloud what you need, honestly) to this.  I knew what he needed, so we went.

We arrived at school and he was tired, but excited to be there.  I spent my morning listening to the pleasant hum of the humidifier while I did homework, sent out 435 emails and making 1,765 phone calls.  It was one of those days.

When I picked him up from school he was sleeping, and slept a good 2.5 hours.  He woke up happy and bubbly.  Happy and bubbly until 11:30pm.  We swung A LOT and he ate A LOT.  All was normal.

I often find myself going over days like this over and over in my head to try and see if there was something I could have done different.  I decided that if I find him sleeping that hard again, I’ll allow him to sleep until the latest time possible and take him in to school late.  We’ll play it by ear. Sleep is very important to kids with epilepsy-it certainly is for our little dude.

Goals for 2012

I've never been a fan of the word resolution.  Whenever I hear the word, I think of Nicolas Cage in the movie National Treasure 2 repeating the word "resolute".  I know.  I'm weird.

By definition the word resolution means the act of answering; solving.

 image

Um, that doesn't sound very new beginning-ish to me.  Does it to you?  Life is not a problem to solve.  A puzzle?  Sure.  But the true definition of the words just doesn't seem to match up with the idea we all have with the New Year.

So, I set goals instead of resolutions.  Goals for the new year.  I find this time of year very fresh and new, so why not clear my mind and make some fantastic goals?

Here are a few of my goals for 2012 (in no particular order):

+ Read more often.

+Watch some of the movies people always gasp! at me for and say "You've never seen that?!"

+Attend church regularly and work on my relationship with the Big Man Upstairs

+Write at least 10 letters to family and friends who least expect it.  That means setting aside time and using a piece of stationary, a pen, and kind words.

+Continue with yoga and practice yoga at home at least 3 times a week.

+Submit my book for publishing.

+Complete the next year in my 2 1/2 year journey to my BA degree. (If you haven't found it yet, a few weeks ago I put a fun little ticker on the very bottom of the blog to keep myself motivated-or something)

+Thoroughly prepare for AJ's IEP in May to make sure what happened this year-does not happen next year.

+Battle the fear that often paralyzes me.

+Bungee jump in Italy.

Ok, not the last one.  Were you still reading? Te-He.  There are more, but I won't bore you.  Those will stay tucked in my trusty notebook. Er, one of my 9,456 notebooks.  Am I the only person who never finds the same one to write in?!

A Very Happy New Year!

Catch Up

Two months without posts leaves an awful lot to catch up on.  Doesn't it?  Oh wait, you're the reader I'm the blogger.  Sigh.

In speed fashion, allow me to catch up:
October:
AJ was Harry Potter for Halloween.
CI Appointment tweaks his low frequencies. Its like magic and suddenly he's keeping his coils on. Research starts on how we can accurately achieve an audiogram for AJ.
AJ has another round of botox in his left hamstring and calf.  His physical medicine doctor suggests a SMO for his left foot.  The orthotic company was able to use the same cast used for his UCBs (received in September) for the SMO.
State insurance officially denied our appeal for physical and speech therapy.
We joined the local YMCA in effort to give AJ pool therapy more regularly.
November:
We discontinue therapy after school and make the decision to make clinic visits during his break periods.
State insurance denies another authorization request for physical therapy even though time has gone by in which we were hoping they'd forget about him and grant us visits.  No cigar.
We discontinue therapy after school and make the decision to make clinic visits during his break periods.
Breaking Dawn Part 1 premiered and I was (sadly) a bit disappointed.
AJ ROCKS his iPad.
Despite my best efforts, Thanksgiving was stressful.
AJ surprised us and attempted raw carrots with success!
December:
We do live in Wisconsin right?  Where is the snow?
School for this Mama becomes increasingly difficult and she wonders what she was thinking trying to do this right now.  Less than two years to go....Less than two years to go....
We received AJ's new SMO for his left foot.  We finally found shoes that will work with both the SMO and the UCB.
AJ ROCKS his iPad even more and begins to seek it out to make requests.
AJ's first-ever Christmas, er Holiday Program, was a complete disaster.  I'm biting my tongue very hard not to go into specifics.
We took AJ to Christmas Eve service at church and he did absolutely wonderful.
Our Christmas was nice and laid back.
Jeremy applied for his Masters program.
On New Years the hubby and I stayed in, watched a movie, and went to bed early.  Yep.  Total Party Animals.

Let's pretend today is December 31st, ok?  One of my goals for the new year is to blog every day.  I know.  A tall order.  Let's think positive!  Also, I've changed my blog settings to allow commenting without signing in, so please feel free to leave us a message!

PECS Book

I've mentioned AJ's PECS before.  PECS stands for Picture Exchange Communication System.  Taken from this website, here is the easiest way to explain PECS:

PECS begins by teaching an individual to give a picture of a desired item to a “communicative partner", who immediately honors the exchange as a request.

At the beginning of the 2010 school year (his 2nd year in preschool) his school SLP and I decided it was time for PECS.  She made him a small PECS book from a small binder (think day planner size).  After asking if she had another binder the same size, I made one for him to use at home. Since I am in the middle of making him his 2nd (BIGGER) PECS book, I figured I should get these photos on here ASAP!  I was thrilled to finally find the pictures on our old laptop to share with all of you!  

Supplies Needed:
Small Binder
Velcro "Rough" & "Soft"
Pendaflex Poly Clear "EasyView" File Folders
Cardstock or Construction Paper 

Computer/Word Document

Laminator/Paper Cutter/Hole Punch

First, eyeball how long your velcro strips will be and cut to size.  Choose either the rough OR soft but make sure to cut the same "texture" for mounting on the top of the binder and each page.

 I chose the "rough".

I used the label sheet for the folders to decide on the right size pages.

Cut your folders in half first.

Then cut to desired size.

Make sure they fit, then hole punch.  Er, it is a bit tricky to line it up. 

 I made marks with a pen.

(Make sure your binder surface is clean!)

Mount your velcro on the front.

And on each page.

I created a table in MS Word, making sure each row/column was 2x2 inches.  

I inserted pictures of AJ's things and also used general images from online.  

I cut red pieces of cardstock 2.25x2.25 inches to back the photos.  Red  is the color AJ is drawn to.

I ran the pictures through my laminator

*NOT PICTURED*

I then cut them, cut squares of "soft" velcro and placed

a square on the back of each picture.

Here, I've put them into categories.  

When we first started, they were all mixed together.

And finally, here are some photos of my little man

COMMUNICATING!

2011 ToysR'Us Differently Abled Toy Guide

It's Here!

This year's ambassador for the guide is Eva Longoria.  While I must admit, walking into ToysR'Us sends me into toy overload, I LOVE LOVE LOVE that they put this guide together. Every.year.  This year's guide seems much larger than years past.  Way to go TRU!

Go HERE for the guide's home page, where you can read about it and download a digital copy.  If you choose not to download a copy, you can find the catalog in the stores.  It is usually displayed along with the weekly flyer.  If they are out, try asking for one at the customer service desk.

**Check out the little dudes on Page 20, 22, 28, and 31!