Cooking for 1

Or should I say cooking for 1, the 1 army-sized eating machine that is my son?

Jeremy and I joke a lot about how much AJ eats, but in all honesty we are tremendously grateful that he is such a great eater.

Tonight's featured dish?

Spinach and ricotta tortellini with homemade marinara sauce.

I'm no Martha or Food Network guru, but lately I've been challenging myself to go a bit healthier with AJ's diet. While the kid has an all-you-can-eat pass to whatever he wants because he's so little, that doesn't change the ingredients of those golden arch chicken nuggets that are now ingrained in my brain.  Ew.

AJ eats anything and everything.  The amount he eats literally astonishes people.  If he doesn't like something, it is probably due to an oral issue or texture he is unsure about.  But it makes me happy to see him eat mini trees of broccoli and kidney beans.  If he doesn't want broccoli in that form, he'll eat it in soup the next day.  And not wanting it doesn't mean he won't eat it ever.  It means just not today or for this meal.  I was not surprised when school reported that he loved red beans and rice with hot sauce for lunch a few weeks ago.

I'm on the hunt to find more healthy fats, different proteins, and creative ways to get calcium into his body.  He's still taking those gummy vitamins, but they still haven't magically include calcium or anything else that should be in them-in them.

After a long appointment today, I ran through Starbucks to grab him a cookie and water.  He ate the whole cookie.  I thought to myself, who is that little man chompin' away back there?  It's the same little dude who didn't know what a spoon was.

How far we've come.

I think the cookie thing will be a tradition for appointments at the hospital.  And maybe, just maybe, Mom will get herself a delicious coffee concoction too.  Way to go AJ, Mommy is proud of you!

Finding the Sunshine

I woke up this morning, clearly on the wrong side of the bed.  I haven't been sleeping well recently.  Which may not be surprising, but to me it was since I was on a "great night of sleep" streak for about six weeks.

I growled out of bed, got ready and heard what sounded like blocks tumbling down the wall.  "AJ's up," I announced.  I walked in to see a smirk-faced boy sitting on the floor amidst a million puzzle pieces and the container they go in-on top of his head.

We commenced the morning routine, which currently includes three medications.  His seizure medicine goes down with ease.  I'm the luckiest Mom on the planet that this kid has no qualms about taking medicine everyday.  Twice a day.  The second medicine and its mondo syringe to dispense it is met with minor whining from AJ and anxiety from me.  I prep the mondo syringe with his antibiotics and prep a small syringe with his favorite-Tylenol.  He loves Tylenol and Motrin.  "This first, then this one, " I say.  I give him the antibiotic one mL at a time, slowly counting down how many we have left.  "All Done!" I exclaim.  He swallows, then giggles as I pick up the syringe with the red cherry goodness.

AJ plows through his oatmeal and downs his milk.  I groan noticing the oatmeal on every inch of his pajamas, face, and hands.  If there is anything that I hate cleaning up, it is definitely oatmeal.  He successfully wears his cochlear implants for a full five minutes before flipping a coil off as I am putting his braces and shoes on.  I lose it.  Tears, begging sweetly to be a good boy and wear his ears.  While we make our way down the stairs for "the morning swing" he enables his shoulder to rub off the other coil.  I watch the time closely while he swings, take him to the bathroom, and come upstairs.  He commences the giggle-fest that has somehow become routine when putting on his jacket.  It makes rushing nearly impossible and makes getting his jacket on even more impossible.  We get to the driveway where he corkscrews, I let him fall, and he laughs.  Some days he sits, today I was thankful he stood back up.

As we drive to school I watch him like a hawk in the "AJ mirror" attached to my visor.  We arrive at school, where he flips a coil off as we walk in the door.  I get in the car and feel the uncontrollable tears coming.  I pull out and turn left onto a different street so I am not the mom in her car bawling in front of school.

By the time I arrive home I am no longer crying.  The worries?  They linger.  The thoughts start running on their hamster wheel. School is not going well. We're four days post double ear infection diagnosis.  His ears are fine.  He's been "hearing" for a month after a ridiculous hiatus for who knows how long, this was not what we needed.  Oh, I have to write that appointment in my calendar.  How long will this last?  I have to get him back in the pool.  When is he supposed to see Dr. M?  Make a plan for spring break.  Schedule therapies for spring break...

The sun suddenly breaks through the clouds and I can feel its warmth through the window.  I run around the house, opening the blinds and windows.  How bright it is when light is allowed to shine in!  I go outside and spend some time with the pooch and his Frisbee.  He is happy, I am warm and suddenly feel better.

I find myself all to often wrapped up in the special needs that have special needs in our life as a family.  It consumes a massive amount of time.  And a lot of my own personal energy.  I don't like to drag through a day but sometimes I do.  Raising a child with special needs is different than raising a typical child.  Until you do it, you really don't know or understand.  I have wasted plenty of precious energy on trying to convey that message.  I am needed more.  I am needed in different ways.  We are needed, often, indefinitely.  You give more of yourself to your child than you ever dreamed possible.  And yes,  in a different way than parents just give themselves to their children.  I'm not discrediting you typical parents out there.  No, I am simply stating that my role as a parent is different.

Trapped under the fine print that comes with having a special needs child, I don't often see the sunshine.  His needs-sometimes they make me angry.  AJ doesn't.  The needs do.  The compound idea surrounding special needs can drag you down.  I spend so much emotional and mental energy on what my child has needed/needs/is going to need that my physical energy suffers for it and I'm often a mess when my husband comes home.  I'm thankful its not every day, but recently, yeah.  It's happened a lot.

Time is precious.  And while I cannot force or rush my child, I don't want to waste time either.  I've had  little bits of sunshine creep in here and there.  I love his morning smile and his excitement during baths.  I love how he cuddles me now, when for years I prayed he would do just that.  I hate how tired and frustrated I am at times and how the first thought in my head is often therapy related vs. ice cream date with my son related.

I know too much to enjoy him sometimes. That makes me sad.  I'm not an expert on cochlear implants or cerebral palsy or anything else he has going on.  AJ is a special needs jambalaya.  I need to know a lot in different areas, which is often frustrating to me.  I feel like I have no focus.  In essence, I do.  AJ is my focus.   But when it comes to his needs, its multiple choice.

Spring might just become my new favorite season.  I'm not sure.  I'm sure fall will suck me back in with its apples, pumpkins, and crisp weather.  But for now, I'm welcoming Spring.  Spring's rebirth and renewal.  Spring's sunshine.

The Resilient Men in My Life

Today was one of those days I anticipated to be emotionally draining right off the bat.

Somehow, the day decided to out-do itself and went above and beyond the call of emotional duty.

First up, an appointment with AJ's cochlear implant team.  We decided to try the ESRT test a few electrodes at a time without sleep deprivation or anesthesia.  Amazingly, between five adults and AJ we managed to achieve the ESRT!  A new program was created from the results.  (I will do a separate post explaining more)

And then.

We figured out his processors have been switched.  Meaning, he hasn't been stimulated. As in -NOT HEARING A DARN THING.  Cochlear implants now have this "safety/non-freak out" feature.  The processor only works with one side and is programmed so that it will not work on the opposite side. Can you imagine wearing  a completely different program on the wrong side?  Ouch.

I have no idea how this happened, and it really doesn't matter.  What matters is that we make sure the mistake is not made again.  I'll be using the remote to test each morning to make sure we're copacetic.

My heart literally dropped the floor and I could not control my tears, not matter how hard tried.  This was the last thing we needed.  (How many times have I said that?)  I started questioning things, so that's why he's not turning to his name, etc.  All things you see in hindsight.  It bothers me that I don't know how long he's been "off-line".  When we put his implants on he freaked.  He wore one home and when I tried two, he screamed and I got sick.  Lovely.  I felt so overwhelmed that we were in a broad sense, starting over.    I can't stop his life to help him adjust-the world is a loud place!

After lunch, we went to downstairs to swing and he tolerated two just fine.  The pattern I found today was that he was fine for a while and then just needed a break.  He then tolerated them again...for a while.  This is progress.

A few hours later, we ran over to the neurologist's for a quick, painless visit.   We came home, ate dinner and listened to Pandora.

And he was happy.  Gee whiz, kid.  How do you do it?  As he giggled with intense excitement over the fact it was bathtime, I felt amazed by my little dude.  How.does.he.do.it.  So resilient.  He's always been that way.   He has such an incredible aura about him.  He inspires me to keep going.  If his little body and mind can do it, than I can at least try, if not do it along with him.  His smile is like an etch-a-sketch.  Really.

During AJ's first appointment, my foot fell asleep.  We were all sitting on the floor and I felt my foot fall.  When I attempted to get up at the end of the testing my left lower extremity was completely asleep.  In a very deep, odd way.  It scared me.  I tried to walk and it was this really weird feeling.  Not that funny, ha-ha my foot fell asleep feeling.

And I thought, Oh My God.  My sweet husband has this happen without notice.  I was humbled.  His MS has been playing games recently, which....  Has thrown us for a loop.  We were blessed with a full year without symptoms.  Although his recent MRI was stable, with no new lesions or activity, there are still some not-so-fun things happening.  With no rhyme or reason.  Which is incredibly frustrating.  So, I took my tiny glimpse into his fight and tried to understand all that I could.  So that I can be the best support I can for him. I can't explain how helpless we feel sometimes with all we've been given.  Its just a fact.

My husband is resilient too, you see.  And for that, I love him more than words can express.  He knows.  I know.  And we move forward.  I move forward with the strongest men I've known; the two resilient men in my life.

"I Don't Recall"

My mind has been all too foggy lately.  In fact, a friend posted "I have the attention span of a goldfish today" a few weeks ago and I've adopted that as my "I can't focus" creed.

Seriously.  Last week it was the attention span of a guppie.  On Monday, I slipped even further and said it was that of a sea cucumber.

So when a friend and I were chatting today and I couldn't answer the question of how many electrodes are firing on each of his cochlear implants...I hung up feeling moronic.  I know, I'm my own worst critic.  But seriously, this is stuff I know. This is something I KNOW. know I've asked his audiology team.  In fact, I've seen the electrodes in all their charty glory on the computer screen not once, but multiple times!

Why couldn't I remember?

Oh yeah.  I'm old.

In all seriousness, the sheer magnitude and variety of issues AJ has me juggling is making me increasingly perplexed.  I'm finding it extremely difficult to focus on just one thing.  Because when you focus on just one, the others fall to the wayside.  Believe me, I know. It's a balance, they say.   I'm still struggling with what to keep and what to toss in regards to this boy's massive paper trail.  Do I really need all of his ER discharge sheets?  Do I continue the mass medical binders with tabs for each specialty/area, or do I make smaller binders per specialty?  I'm back to writing my daily to-do's specifically for AJ in a specific notebook. Its been my saving grace.

Earlier this week, while discussing his new conjunction, junction, whats your function...scoliosis!  issue another friend asked, "I really don't know how you do it all. It seems like one thing after another."  For the first time EVER, I agreed with her and said, "You know I don't know either.  I do what I can."

And I drink wine.  Wine helps.

A New Diagnosis, Plus...

It's early Saturday morning and I'm up watching and listening to the snow plow on our street.  I find them oddly fascinating.  I know.  Weird.


So, let's start with the new diagnosis.


AJ has functional scoliosis.  He has what?  Here is a short definition from this site:

Functional scoliosis: A structurally normal spine that appears to have a lateral curve (scoliosis).

Nonstructural scoliosis involves a temporary change of spinal curvature. This is caused by an underlying condition such as a difference in leg length, muscle spasms, or inflammatory conditions, which may produce muscle spasm. Functional scoliosis is treated by correcting the underlying problem. The spine itself needs no treatment.

Functional scoliosis is also called nonstructural scoliosis as opposed to structural scoliosis in which there is a fixed curve of the bones of the spine (the vertebrae).

You may remember Rona from this post. We're scheduling him for outside therapy appointments when he's off school and it just happened to work out that she was going to be at his clinic doing consults.   We beat the snow and were able to see her yesterday for a consult. He had a rough start to the appointment...he thought he should spend the entire time in the net swing.  He always has a rough time getting out of that particular swing because it calms him and turns him into a loose noodle.  

I also think he is able to anticipate what is going to happen.  As in, they are going to move my body is ways I don't want to be moved. He's a smart cookie.  He was arching, pulling off his equipment, and I immediately took to the iPad to show him the "Time to Work" symbol.  I then sat next to Rona and he calmed.  

I've learned how these consults work.  They are literally "fast and furious".  Not in a bad way, but in a constructive way.  His SLP and PT were also there, with his PT taking notes via laptop (when she wasn't concurring with Rona), and his SLP doing the paperwork and facilitating the ipad (when she wasn't working with her) while Rona did her thing.  

As the words scapula, clavicle, rib cage, and "lats" started to float around, I began to feel amazed, as I often do.  I've been around the block enough to know good therapists from bad therapists.  Does that sound harsh?  I was, for the 7,234 time, amazed and thankful for his therapy team.  

And then they said it.  "He's got some functional scoliosis going on here." Some what? Scoliosis has been a word used in association with AJ before, as in we want to avoid it, but not functional scoliosis.  In short, he's growing SO FAST that his muscles are tighter than they already when growing.

Tight + Additional Tightness = Pressure on the spine = Functional Scoliosis.

It also equals pain for my little man, which is not ok with me.

I turned him around and had them show me, sure enough, a little curve.  I could suddenly see how his left shoulder was all "wonky" and this strip of tight muscle pulling from his left shoulder to his right hip.  No wonder he's all WONKY!  

So what do we do?  Soft tissue exercises.  The good thing is that it is temporary and can be treated, we just need to keep on top of it.  I had his PT show me what to do at home.  I am SO grateful for the huge exercise ball Grandma Cheri got him.  The first thing the PT did was put him on the ball and do some rotation and lengthening pressure maneuvers.  We also need to get him in once or twice a month to check in with his PT/SLP/OT at the clinic.

I did the exercises twice with AJ yesterday after we got him.  He was more open to me manipulating him than he was with his PT.  When he's not used to his body being in a certain position, even if it feels good, he sort of freaks out.  His security blanket is pulling it all in, tight.  When getting him ready for a bath, All I could look at was his spine.  I imagine I'll be obsessed with it for a while.  His body felt better and he moves better after the stretching and lengthening.  I don't want him to be in pain. At all.  After I had my cry and moved on to the logistics of the whole thing, I started putting together the puzzle.  Is this part of why he's frustrated at school and sometimes at home? Because he's in pain and uncomfortable and can't tell us?  I would bet money on it.

I'm thankful its temporary and that there is something we can DO.

Rona also observed him eating and was thrilled with the progress he's made.  She talked with the SLP on some things to work on to help lateralization of his tongue (he just doesn't want to do that!) and some other things.  Nothing that we weren't working on already, but Rona always has some trick of the trade that works wonders.  

I also learned that the most recent orthotic that we have for his left foot, is causing pronation. It's tiping his foot in, like this (the outline is normal placement of a foot):

image

His foot already turns in!  He was casted wrong, which makes me not so happy.  We lost our favorite orthotist last year.  Sadly, who you see makes a difference.  I hope we don't have to have him re-casted and that the current SMO can just be fixed.  

Moving on...
Seizures
AJ only woke up on his own once this last week.  Sigh.  We did receive his Keppra level back-it was normal. As expected.  Sigh.  I've got a call into his neurologist to see if I should wake him or not.  He's sleeping the same amount of hours (12 to 13), its just 8 to 8-ish now instead of 6 to 6 or 7 to 7.  I think its a combination of the cold he's had all week, growing, and brain activity. Now that we've learned about his functional scoliosis causing him pain and making him tighter, I think that is part of it too.  I also need to chat with neurologist about the ERST (see below) and whether sleep deprivation (forcing a nap during the appointment) or anesthesia is a better route.  AJ did wake up on his own this morning and I was so excited to see his smiling face when I opened the door and he was standing there.  Hooray!  I hope it continues...

Vitamins
A few weeks ago I left a pretty excited message for AJ's dietician at the GI Clinic. I had found a "Complete" chewable gummy vitamin and wanted to share with her.  The vitamin drops for infants don't have the right balance of what he needs at his age and are missing quite a few things.  The regular gummies are missing essentials too.  They are indeed, not complete.  That word is drilled into my head.  So imagine my sheer bliss when I find these Flinestone Gummies and they say COMPLETE!  And, AJ takes them like a champ and requests more!

I got a call from his dietician.  Turns out, these gummy vitamins are NOT complete.  This is clearly a false advertisement and not only will Bayer be hearing from AJ's GI Clinic, but from this frustrated Mama.  I had Jeremy take the empty bottle to work so he could give it to his dietician, just because.  We decided these are better for him than nothing.  But, of course I knew they'd be worried about something.  They want to make sure he's getting enough Calcium.  I downloaded a handout on the hospital website regarding how much calcium he needs for his age.  I'm thankful he's now requesting milk!  


iPad
Today was saw AJ sign the word "more" a lot.  I mean A LOT.  Repeatedly. Its his new way to say "I need to tell you something-I need my ipad."  Which is quite brilliant if you ask me. Brill-iant.  We're straddling a fine line of patience with this boy.  I've been corresponding with the company that created his communication app, almost every day for the past few weeks.  We are trying to hammer out some kinks.  It is amazing to have an answer from the founder of a company in your inbox two minutes after you sent it.  


We are still working out the kinks with having school trained on his iPad.  Frankly, I am frustrated. But we are closer than we were before and I am trying to focus on that.  In this post, I mentioned the list I was coming up with in regards to what the staff needs to know regarding his iPad.  While the iPad is, pretty simple, organizing and knowing what needs to be used on a daily basis for AJ is a bit tricky.  I mean, if I gave it to you and said go to iComm, storyboards, reorder moving "J" to "K", and OT with speech, hide playground, add ball and shaker, enter time ring into picture menu, then make sure to access the video...would you know what to do off the bat?  Probably not.  My list ended up spanning 5 pages and yes, included tables and highlighted section titles.  


School
This year, so far, has been a year.  I wish I could say its been a breeze.  What I am learning?  AJ is a curve ball, in every sense of the word.  The programming for his school day, which was planned last spring/summer, is just simply not working effectively for our little dude.  Meetings are taking place, like gang-busters to remedy and make things better for AJ.  We are aiming to strike a balance between AJ's special education needs (SE) and deaf education needs (DHH). Right now, it is lop-sided, with DHH outweighing SE. Anyway, things are changing.


Cochlear ImplantsWe've now learned that there is not enough research to show how sedation may or many not change/alter the results of an ESRT.  However, we have results from an "awake" ESRT AJ had last year, so we'd have something to compare it to.  Given AJ's history, our CI Clinic has said they'd like to put AJ under anesthesia in the OR for the test.  This kid doesn't do anything half way.  Oy.  We still have not decided whether to do this or not, but I've been obtaining additional opinions and doing some research of my own.


I'm also excited to announce that we've been accepted into a study through the University of British Columbia in Canada.  The study is exploring parent experiences of the cochlear implant process for children who have special needs in addition to deafness.  As I spoke with the staff at UBC, I had goosebumps.  Hearing that someone actually realizes that our process is different. Amazing. Not only do they want to improve the parent experience, but also educate and assist professionals and CI teams to optimize delivery of services.  The woman I spoke with, asked for a brief explanation of a few things to see if we qualified.  Her response (after my 10 minute answer)?  "Whoa.  Um, yeah.  You definitely qualify."  I'm super excited about this and can't wait to share our contribution.  


Vision
I've been going back and forth with the vision specialist in our school district.  She's had a chance to observe him a few times.  Following her observations I asked her for any suggestions or tips she could share to help AJ use is vision more effectively.  The beauty is that the iPad acts like its own lightbox!  It helps him focus.  He still has a bad habit of using his hands to explore things, grab, or even eat without using his eyeballs.  Grr!  We're working on making him use his vision.

Snow
We've finally had our first few snowfalls.  WOW.  I think I literally shed a tear the first day I drove AJ in the snow to school.  It took me a whole 15 minutes.  All of the stress of selling our house and moving went away in those first few drives.  I'm anxious for spring though.  Aren't you?

"You Do It" Chart

AJ has fallen in love with these frozen sorbet bars.

image

I first found them around Memorial Day last year and thought we'd give them a try.  Of course with intentions of increasing his oral awareness, biting, and fine motors skills. Not because they are fun.  Heavens no.  My brain works in strange ways, people.  He didn't understand the concept and didn't want the tube anywhere near his mouth, so I chopped them up into pieces and put them in a bowl.  He ate them with a spoon.

Fast forward to two weeks ago when he was eating everything and anything in site and I gave one to him out of sheer desperation.  Guess who's eating them all by himself?  Tube and all?  Yep.  I'm so proud of him!  And, the fact that they are natural sorbet bars makes me feel less guilty about giving him more than one.  

We are working on teaching him how to push the frozen goodness up through the tube.  Sometimes he attempts it on his own, or bites the tube itself which pushes the goodness up.  Other times, he's quick to just hand it to me.  I don't think so, dude.  "You Do It" is a very common phrase around here.

And then I stumbled upon this handy chart the other day.  

Huh.  The picture didn't turn out as clear as it looked on the camera.

Anyhow, I've posted the chart on the kitchen cabinet as to remind us what he can do on his own, and to facilitate helping him learn new independent skills.  I laughed when I saw the dog dish and the word "feed" on the chart.  Something so simple that I hadn't thought of.  He loves to give Rocky treats, so why not practice scooping and pouring by feeding him too?  Genius.

We're all about fostering AJ's independence around here.  Sometimes, yes, we do things out of habit, in a time crunch, or even subconsciously.  But he's proving more and more than he can do more and more so, we're going to do our best to encourage him.  

Even if it means he gets to eat 4 sorbet bars at one sitting.  Practice, right?

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!