Q&A ~ April 2014

In an effort to answer everyone's questions we thought we'd do a little Q&A:

Q: Are you still adopting Mimi?
A: YES!

Q: Tell me again...where is she?
A: Bulgaria.

Q: How long have you been in the process now?
A: We decided to adopt in March 2013, so we are in over a year.  If we are talking about Mimi specifically, we are 10 months into her process (received her information in June 2013)

Q: Do you get pictures of her?  Or updates on how she is doing?
A: No we do not.

Q: Why don't you get pictures or updates on her?! That's awful!
A: Bulgaria is a Hague country.  This means they signed onto the United States Hague Convention which has strict rules set in place to protect the children, birth parents, and adoptive parents. The Hague requires intercountry adoptions to be completed under internationally agreed upon rules and procedures to make sure children are provided with permanent, loving homes and that adoptions take place in the best interest of the child.  The Hague also exists to prevent child abduction, sales, and trafficking.  You can read more on the Hague HERE.

The Hague does not allow us to have contact with anyone associated with her care.  This includes her orphanage and our in-country organization handling our case in Bulgaria. We know nothing with exception to her original referral information and aren't allowed to know more until a certain point in our process.

Q: Isn't that hard?
A: Incredibly.

Q: But she's your child, right?
A: Technically, no.  She's not ours yet.  We are committed to her in writing and she is "on hold" for us.  See more in the Q&A's below.

Q: Did you pictures of AJ?
A: Yes we did.  We received pictures and basic medical updates pretty much monthly.  The pictures were a Catch 22.  Hard to see him grow up without us, but also pieces of hope that helped us through the process.  They would always show up in my inbox at the exact moment we needed them to. Guatemala was not a Hague country.  Adoption in Guatemala ended in 2007, just months after we brought AJ home.

Q: Does AJ know who Mimi is?
A: Yes he does!  He recognizes her "voice" in videos and can accurately choose her from a group of people.  He gives her kisses on his iPad and is in her room a lot.  We are working on an experience book for him about our first trip so that he can learn where we are going and why.

Q: What's the latest with Mimi?
A: This is a loaded question.  Short answer: We are still waiting on the Bulgarian Ministry of Justice (MOJ) to issue her official referral which gives travel approval for our visit.  I know, I sound like a broken record.  But honestly, we should be hearing any day now and surprise-it can be any day-not just Wednesdays! This official referral lists her name and our names on the same piece of paper.  And its official.  Its pretty exciting.  We've already received the verbal referral where they've approved us, now they just need to type it!

Q: What is taking so long?
A: Meh.  Another loaded question.  This is the way it works, folks. We are at a point where we are under the mercy of others.  It is quite literally out of our hands.

Q: So when do you visit her?
A: We are hoping for June.

Q: How long will you be gone visiting?
A: We are required (yes I said required) to spend five working days with her.

Q: Will she know you are coming to see her?  Does she know she has a family?
A: We know that they do tell the children when we are coming to visit and the travel has been finalized.  They often teach the kids to say Mama, Tata (Daddy), and I Love You.
Sigh.

Q: What happens during the visit?
A: We will spend a few hours with her at the orphanage each day.  How long we don't know.  That is determined by the orphanage director's kindness and willingness as well as her schedule/routine. We will have a translator with us the entire time and be able to ask as many questions as we like about her.  We will have access to several professionals that know her well and we'll all be talking a lot about Mimi.

Q: What happens at the end of the visit?
A: We travel back to the capital city of Bulgaria and sign some official documents that yes, we still do want her.

Q: What happens after you come back from your visit trip?  
A: LOTS.  Here is what will happen:

1) We come home and fill out an I-800 form for USCIS (US Immigration).  This form identifies HER specifically.  If I-800 sounds familiar, that's because we filled out the I-800A earlier in the process, applying to adopt "an orphan" from Bulgaria.

2) I-800 is approved

3) USCIS sends notification of our approval to the US Embassy in Bulgaria.

4) US Embassy in Bulgaria notifies the Ministry of Justice (MOJ) in Bulgaria that the US has approved us. This is called the Article 5 Letter.

5) MOJ signs off on the Article 5 Letter. *This has been taking a while---sad face*

6) Our case is issued a date in Family Court.

7) Court says YES! She's ours!

8) We post 3,548 pictures of her on Facebook and the blog.

9) Pick Up Trip

Q: So, what's the timeline on all that whoo-ha?
A: Um, your guess is as good as ours.  Let's just say it won't be simply a month between trips.
Sad.sad.sad.face.  Bulgaria shuts down for the first two weeks of May and the entire month of August so we will hit both of those delays.

Q: Wha??? When is she coming home?
A: At this point, we are hoping for Fall 2014 but it could be between Fall and Christmas. 

Q: Why so long?  Isn't this longer than you expected?
A: I wish we had a straight answer for this question.  We are at the mercy of how fast each of the above steps are completed.  Longer than we expected?  Way longer.

Q: What can we do for you?
A: Pray.  Pray for Mimi.  Pray for us.  Please do not forget about our baby girl.

8am on a Monday

It is 8am in the morning.  I just ate a poptart for breakfast, curled up in bed with the laptop.  The hubby is curled up in a comforter on the couch and AJ is still sleeping.  So why am I not sleeping?  Darn you  Mommy-insomnia.

AJ's been sick for about 2 weeks.  A cold has been going around his class and all the kids have had trouble getting rid of it.  So I thought nothing of it other than-bad cold.  Fast forward to last Friday and AJ takes a visit to the pediatrician.  Bronchitis.  Fast forward several hours, Mom and Dad have it too.  We all get the same medication.  I thought it was hilarious, given the situation.

We felt pretty good on Saturday night and went out with friends.  Yesterday, we crashed and burned.  I had been leading with "feeling better" points, but AJ took that over yesterday.  He begged to go to sleep early and then bee-bops in and out of his room for several hours.

I tried to go to bed early last night, only to be distracted by the flashes of light that were outside our bedroom window.  Quite the electric storm and lots of thunder boomies last night.  I turned on a movie and fell asleep.

2am I hear giggles coming from AJ's room.  I go in and change his pull-up and try to get back to sleep.  More lightening. Restart the movie.  AJ keeps on giggling. Jer wakes up coughing and the broken sleep continues.  AJ's always been a great sleeper, so it is rare for him to be up, and we're used to not being woken up during the night.  I don't do so well with broken sleep.

I kept AJ home from school today again in hopes he will be energized for school tomorrow.  While he's feeling better and running around like a  maniac, he's still sick.  Jer stayed home too.  Its rainy and ucky out.  A good day for PJs, chicken soup, and movies.

It seems like we've all be sick forever...or at least AJ and I have been.   We have not been so lucky this winter.  I'm so ready for Spring and nice weather....

Do You See What I See?

It is 5:30 on Saturday evening.  I'm sitting at our kitchen table, staring out our massive picture window in our dining room.  I've been sitting here since 5 o'clock, when I suddenly realized it was still light outside.  I see pretty white snow, thick solid icicles hanging from the gutters, willow trees, a massive field, and cars passing to and from on the 4-lane highway that runs past our house, each with white and red twinkling lights.

If you were sitting here with me, would you see the same things? 

I would venture to say no.

Not all of us see eye to eye. 

AJ's life is filled with countless professionals.  Physicians, Therapists, Teachers, and More.  Almost sounds like a store title.  Pick one from this aisle of expertise.  Complete with tags declaring a guarantee that aisle 2's ideas won't line up with aisle 5's.  And lets not even start on the the other departments.

And here I stand, with a shopping cart, ready to fill it with anything and everything to help my little man succeed in life.  How do I choose between whats just icky, processed generic fit-into-a-mold information and natural, certified organic information? 

I suppose it would be safe to assume that my shopping cart would be where everything melds together and ends up looking as beautiful as Sunday Dinner.  The truth is that sometimes I'd rather just be a 5-year-old with one foot on the base and my hands steering the cart...as I zoom through the store of professionals not stopping to look back.

All these different hands, different opinions, different backgrounds of expertise.  All with the best of intentions.  A big kettle of brew and I'm standing with a giant spoon.....

I've struggled over the past few weeks to inform, condense, and make sense of our recent happenings.  Which means a lack of blog posts. After telling my husband I was having trouble with posting on the blog, his answer was this:

"Life is grand. We're going to Hawaii in 4 days. End of story."

Quite a post, hey?

Our house has been on the market for a month already.  Of course there is drama surrounding that...of course. 

Last week I received a call regarding AJ's transportation to school that completely threw me for a loop...and made us do some serious thinking.  AJ's made it through two winter ear infections, and is still walking despite his continuing growth spurt.  A recent follow-up with his CP doctor allowed me to look at things from the "CP side" of AJ's life.  It was a refreshing and eye-opening visit.  It was another appointment where I left in tears.  GOOD tears, knowing he is in the best of hands and that she's truly in his corner. 

I've been busy prepping for our vacation, which is finally upon us.  Printing detailed instructions, packing, and doing last minute errands.  We are so excited to spend time, just the two of us.  While we are gone, AJ will be partyin' it up with Grandma Cindy. 

AJ's doing ok at school.  We've had some bumps in the road recently.  His therapy sessions are either fantabulously great or horrible.  There has been no middle ground to speak of.  We're beginning to think about his next IEP, which will be in the Spring.  AJ's tall enough to get off the toilet by himself-which is really freaky when you're not expecting him to come around the corner.  He can sign "open" and is emerging with "push".  He's holding his arms up and vocalizing for "up".  He's doing this waving thing...although I'm not sure what it is for certain.  I'd like to think its waving.

He's displaying a not so great behavior of taking his implant off...and pulling his glasses off.  Which means he's maturing, but the behavior is not so welcome.  We're looking at adding a therapy to his schedule and doing a disco-shuffle with all of his therapies.  I'm not sure how this is going to work out yet.

Like I said, big shopping cart and giant spoon.

But you know what? 

We're going to Hawaii in 4 days...

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.

Springing Forward

Regardless of the snow we got yesterday, I'm saying its officially Spring.  The time of year where I apologize in a one-way conversation to Jeremy's grandma.  I know she watches from heaven and shakes her head at me.  I know, I know.  The yard is...lack luster.  I apologize for not being a flower/garden/planty person and know that she knows AJ is my current project...and that I'm more of a crafty gal, than a flower gal.  I walk around and see what plants have survived all these years and promise this year will be the year I put up a new bird feeder.  Without fail, I'll see a cardinal on one of the back pine trees and know she's listening.

Last week was nothing short of gorgeous.  AJ and I spent a lot of time outside in the afternoons.  I left the screen door propped open so the dogs could go in and out.  AJ surprised me by coming back outside, independently manipulating our two front steps all by himself.  They are steep-so I was amazed.  He did a lot of walking around the truck as well as up and down the driveway.  

His walking is so much better.  We took a kick ball outside and practiced kicking in standing.  Actually, I was trying to roll the ball in his path so that as he walked he would kick the ball.  It worked until the dog realized it was a ball that I was pitching at AJ.  Sidenote: all balls belong to Rocky, our German Shepherd.  Goof.

CI:  Last week AJ's CI decided to stop working at school.  Reason 8,453 we love that he's at his current school.  His school staff know how to troubleshoot CIs.  This time, it wasn't so simple.  Since I was in the area, I buzzed over to school to check it out.  The safety lock refused to budge.  Once I popped that off like a champagne cork, the pin insert, which holds the processor and battery pack, refused to budge.  ???  I finally got that out, swapped out the cord, and put her back together.  Still didn't work. 

Long story short-the backup cord I used to replace the old one, was also bad!  It happens.  The pin was also bent-again.  We seem to be the only ones that bend pins. I called our handy-dandy Med-El rep and ordered new cords, a new pin, and a new safety lock.  As I sat with his coil, processor, cord, and various other parts, I was amazed at how quickly I was taking it apart, testing, organizing the parts so they wouldn't get mixed up, etc.  A year ago I was afraid to touch the thing.  :)

The next day his CI acted up again.  Grr!!  Not the same extent, but its still frustrating.  Of course you want it to work 100%-100% of the time. We've been keeping a close eye on it and testing it often, just to make sure its working.  I've got a call into his CI audi to check with her.  We might send the processor in and have him wear his backup for now.

The good thing in all of this?  AJ "told" the school staff it wasn't working.  He totally knows what this thing on his head does and can tell when its not "on".  He kept taking it off his head.  Way to go AJ!  He did spend the rest of the day at school "off the air", but I'm ok with that. It was only an hour of school.  He was patient, even though he was off the air, and still participated.  Another reason we are glad he'll be bilateral soon.  If one goes, he's still got access to sound.  When he was "back on the air", he began vocalizing right away.  CI's rock!

AJ's Girls:  Almost 2 years ago, we put a flyer up for a "sitter job" in the student services area of a local college.   We knew with AJ's disabilities and his CI equipment we wanted someone reliable.  Result?  Jenna and Abby. Two wonderful nursing students who have been nothing short of amazing with AJ. 

They both learned sign language to aid communciation with AJ, learned how to work his cochlear implant, knew what behaviors were allowed and not allowed, rolled with the punches when AJ's schedule/activities/etc. changed, and put up with our overbearing gigundo dogs.    They gave me the chance to talk to adults during the day, go to my own appointments, and get.things.done. They gave Jer and I the chance to get a way and just be a couple for a few hours.

They love AJ and it shows.  We could not have asked for better sitters.  And now they are graduating.  I am so incredibly sad.  I told them they could not graduate.  We wish them all the best and hope they enjoyed spending time with AJ as much as we enjoyed having them in our lives.

AG Bell: We are submitting our scholarship application for the AG Bell Convention in Orlando, FL in June very soon.  I am REALLY REALLY REALLY hoping we are granted a scholarship.  This would be a fantastic opportunity for Jeremy and I to learn from professionals and other parents from all across the country.  I'm also hoping Jeremy can take the time off of work.  If not, I'll be going solo.  IF we get the scholarship.   What is AG Bell? Cross your fingers and toes we get a scholarship!

Family Support Program (FSP):  We've applied for services through Wisconsin's Family Support Program.  What is the Family Support Program?  There is a waiting list for this program.  We are hoping to receive funds to help cover some of AJ's equipment, etc. Bascially, things that insurance won't pay for that come out of our pocket. We've been encouraged by several of the agencies we work with to apply for this funding, so we're doing it. 

Intensives: We plan to have AJ attend the week-long intensive therapy session through Partners for Progress in October.  Partners for Progress is run by the two world renowned therapists who have both treated AJ.  We just received our packet, so we're putting in our availability for October, so they save a spot for AJ.  If we are lucky, the FSP funds will be available then to help pay for the intensives.  If not, we'll hope for it to be available next year.

IEP:  As usual, we are beginning our transition from freakout mode to preparation, man your battlestations mode.  This is again, unfamiliar territory. We haven't been in this position yet, where he's already been at our choice of school for a year and we are requesting for him to return for the summer and following year.  We are hoping to pow-wow with his teacher and get her thoughts on things, to further help our preparation.  I also need to find out who will be present at this IEP.  It will be scheduled soon, which I'm sure will throw me into another freakout-temporarily.

Communication: AJ has totally got the object communication down.  With everything, except the potty.  His control has gotten much better in the potty department, though, let me say.  He thinks its fun to go potty in public places, because they always have sinks.  Fun sinks.  That have soap and water to play in. 

Back to the communication.  He is able to use object communication when he wants his juice, milk, or to eat.  To brush his teeth.  He knows his coat means bye-bye and will bring it to you when he wants to go outside/go bye-bye.  He has increased his leading skills.  Example: Yesterday, he came into the dining room, took my hand, led me to his room, reached for the door knob, when he couldn't turn it, he took my hand and put it on the doorknob, I hand-over-hand helped him turn it (he's so close!), and he led me to his bed.  Translation: Mom, I'm tired.  I want to lay down.  I was shocked.  And proud. 

I'm almost thinking of trying pictures with him, of his spoon/fork/juice box/milk carton on the fridge.  I wonder what he'd do.  I guess we'll find out.  Now if we could only get this potty thing down.  He knows the word potty now, which is awesome.  We need to continue working on head nodding . I'm determined to get him to nod his head yes/no, wave hi/bye, and point to things.  I think Daddy would be thrilled if he pointed at the basketball game on tv. 

This week is jam-packed with appointments and events; 7 to be exact.  Wish us luck!

*Gasp*

I just felt someone punch me in the stomach.  Not really, but the wind was certainly knocked out from under me as I realized AJ's next IEP meeting will be in 2 months. 

How did I not realize this until just now?  I'm not really quite sure.  Maybe because my brain subconsciously thought the meeting would be around his birthday again.  Which makes absolutely no sense.  The school year ends in early June.  Which means his IEP will be in late May.  I'm sure it will happen before the end of the school year.  This is exactly what we wanted to avoid.  It would take a sheer miracle, with several layers of wonderfulness, to have us in Waukesha by May.  We will be considering next year's placement, including ESY (Extended School Year) for the summer, and what to do when he's not in the month-long ESY program.  We will need to discuss PT, OT, speech, and on, and on, and on.

Over the winter {this is my bold attempt to use past tense yet again}, I stayed in the Waukesha area while AJ was at school.  Many days I'd drive around different neighborhoods, write down MLS# from for sale signs, pick AJ up, and head home.  We are nervous about what we are going to find in the price range we are hoping for.  We aren't shooting for extravagant or huge.  No stainless steel appliances or updated flooring.  We're really looking for square footage, in regards to having a space for AJ's therapy/play area.  From what we've seen, slim pickin's my friend. 

Our financial situation {living on one income} is not about to change anytime soon.  And you know, that sucks. AJ's needs continue to increase, which is something we must take into consideration.  We are unable to rent, due to our pets.  We struggle to find the time to finish what needs to be done to our current home.  This is...a lot to think about it.  I am, frankly, tired of telling people we are going to move, with different dates in the "fill in the blank area".   We are really freaking out stressed about this whole situation. 

In other news:
We were finally able to order AJ's glasses.  They will take a few weeks to come in.  For those in state of WI, Medicaid/T19 will not pay for the frames, only the lenses.  Nice to find that out when I went in to order them.  I made a quick call to his ophthalmologists office to update them on Medicaid/T19's payment for glasses, as they told me the whole thing would be covered.  I'll be the guinea pig, if it means some other young Mom & Dad don't have to go into an optical store and be asked for cash on the spot.   Remember I said he loves glasses?  Nope.  He hated trying on the frames (no lenses).  Lovely.

AJ's evaluation with Rona Alexander went well.  It was amazing to see her treat firsthand. She may see him again the next time she consults at his therapy clinic.  YAY. I videoed the entire session into four separate videos.  Wouldn't you know my camera decides to not cooperate.  I am unable to transfer any of the videos to the computer, and when I play them back on the camera, I can only view 2.  AJ's PT had asked me to video for her benefit, for AJ's OT, as well as his new SLP.  I also wanted to share it with AJ's teacher and therapy staff at school.  What is with me and cameras?  I will say that this happened twice already, when we attempted to video AJ during treatments by another world renowned therapist (PT). 

I am anxiously awaiting Rona's report.  I am not anxiously awaiting the bill after our primary pays.  She is so totally worth it, but gulp.  I feel like things are constant piling on top of us.  We are also waiting on the go-ahead from T19 for AJ's speech/feeding therapy.  Once we get that, he can begin therapy. 

The same day AJ saw Rona, we had my Gram's internment.  Stressful day.  I had wanted a sitter for the dinner after, which didn't happen.  AJ did well up to the dinner, but when you walk into a nice bistro with a almost 4 year old that just had one of the most intense therapy sessions of his life and no nap, you worry.  A lot.
I miss Gram.  I find myself thinking of calling her to tell her something.  I don't actually pick up the phone or anything like that, I just think about it.  And then I remember she already "knows".  That, to me, is pretty cool.

AJ was "verbally" approved for another year of Medicaid/T19 through the Katie Beckett Program.  We had our every-other-year home visit from the KB rep last week.  While I shouldn't be nervous, I usually am, since it is such a blessing to have this secondary insurance.  I think I am also nervous due to her telling me he didn't qualify when I called her on the phone and told her his diagnoses way back when.  Thank God his PT told me to schedule a home visit so this rep could see him in person. 

I straight-out asked if there would ever be a time where AJ didn't qualify.  She answered, "Unless he has some miraculous recovery and catches up to his peers in every area, I don't think you have anything to worry about."  Comforting and tremendously heartbreaking at the same time.  I will also say that if anyone thinks we are "milking" the system, or that this is the easy route, you are seriously mistaken.  I plowed through two ink cartridges and handed her over 125 sheets of paper-copies of his IEP, IEP update, recent progress reports from his therapies, and their handy dandy stack of paperwork.  Totally worth it, but not easy street.

And, I watched a hoarding show tonight.

Talk about having the sudden impulse

 to completely empty my entire house. 

Gives me the heebie jeebies.

Sunday Night Raw

Sensory Intergration Dysfunction, also called SID, is our most recent enemy.  AJ has had a remarkably bad weekend, full of sensory overload.  I haven't seen him like this since the fun hotel kiddie pool last summer.  Although, this weekend was far worse. 

The worse thing about it, is there is nothing we can do.  We all know Jer and I don't play that game.  Very Well.  Ok, not at ALL.  Nothing to do but sit and wait until he calms himself.  Sometimes it is difficult to dicipher his SID kicking in vs. a typical tantrum.  Then you feel like the worse parent ever because you got it all wrong.  It isn't a tantrum.  He can't stop.

The trigger?  Our vacuum.  While I am overjoyed to have our Dyson back in working order, it seems to be AJ's trigger.  He's always enjoyed the vacuum.  Sitting next to it, the vibration, and even the sound.  Yesterday turning it off caused a full on SID epidsode.  I mean screaming at the top of his lungs with no end in sight.  So today, we devised a strategy where I would play with AJ in his room while Dad vacuumed.  I knew he could hear the vacuum from his room, but we continued to play.  If you think I'm going to take off his coil every time we vacuum, you're crazy.  Usually "No" works, but given yesterday's episode, we thought a safe distance would be good.  I thought we should read a few books, so I went in the living room to grab his new reading bench thing (I'm so technical) and an assortment of books.  He merely saw the vacuum.  When we returned to his room his SID had started.  Yep, dumb move Mom. 

I tried to keep reading to him, keep him engaged and he.was.done.  I'd say I tried for 15 minutes before I had to let him be. I took off his implant and put him to bed. He ended up passing out in his bed about 20 minutes later.  After banging his head against the mattress-which he still does now and then to fall asleep.

He slept for three hours.  He's been taking unexpected naps a lot.  And now the SID episodes?  Something is going on.  Growing, I suspect.  He's been eating and drinking like a horse.  Seriously.  I don't know where he puts it all.  He's still teething.  I'm about ready to yank them out.  The child is almost 4.  Enough with the teething!  Its also continuing to hinder his bitting and chewing, which is bugging me.  His molars are ready to pop at any second.  But that's the thing-they don't! 

He had his left ear testing last week.  All went well.  They will submit to insurance after we meet the surgeon in late March.  Oh, but there's a catch.  One we didn't know about.  I'll get to that.

AJ also had his speech evaluation last week-on the same day as his left ear testing.  It went extremely well.  We are sitting tight until he sees the world renowned SLP this week.  Once we get her feedback, we'll be devising a plan of action.  His PT sat in with our new SLP to view his posture, etc. while eating.  30 seconds later she had Thera-band around his feet and knees to kick in his butt muscles and had his chair tipped forward.  Oh, and I'm banding him at home and tipping his chair with phone books under the two back chair legs.  He's going to need something else to sit in, I can tell already.  I'm hoping I can get them both to stop by sometime soon to look at our set-up and how we can adapt it to his needs.  I do know that they want to do VitalStim on AJ.  Great, now my kid's getting zapped.  It's really not that big a deal, its just one.more.thing.

Oh, and his eyeballs.  Earlier this week AJ's teacher sent home an "Ocular Report for Known or Suspected Visual Impairment" for his ophthalmologist to fill out.  I freaked out.  All this time we had been talking about doing certain things to help AJ visually attend better to things (example: placing a bright color of construction paper over the left side of a book so he can focus on the right side).  Never thinking it was because they were suspect of an actual visual impairment.  One.more.thing.

We had his appointment last week and his ophthalmologist took a look at his eyes.  9-months post-surgery and they still look good.  The alignment seems to be holding.  Around 1 year post-surgery is when we will really know if the alignment will hold for good.  She didn't just suggest the glasses this time, she told us to get them.  AJ is a bit near-sighted due to his astigmatism.  She didn't see anything else. Whewwwwww.  She also shared that AJ's T19 will cover his glasses.  We didn't know.  We stopped yesterday to order his glasses.  No such luck.  One kit of the Miraflex frames is shared by 9 stores, so the clerk has to order the kit, then call us to come in, then order the glasses.  Oiy.  We can go to another optical store, where they have the glasses in stock and ready for purchase, but we'd have to pay out of pocket.   Decisions.

I am sad AJ needs glasses.  Like he needs another thing on his head.  Like he needs another thing, period. Not only that, but I remember being teased as a kid-A LOT-because I had glasses.  We might be lucky though.  AJ has and continued to love any type of glasses you put on him.  From Auntie Jodi's sunglasses to the silly clown glasses we just found for his class "Circus" theme.  He cries when they fall off and wants you to put them back on immediately.  We can only hope.

Jumping back to his left ear testing appointment...I was informed that T19 is not paying for ANY 2nd (sequential) bilateral implants.  A few were approved a 2-3 years ago, but after that, T19 caught on.  Of course they won't deny quickly.  They, apparently, send back requests for more information and then take the full 60 days or more (sound familiar?!) to deny.  While we are confident our primary will approve AJ's 2nd implant, this puts even more pressure on the very idea of them approving or denying this.   It also makes us panic regarding how in blazes we are going to pay a co-pay or deductible on a surgery.  This information certainly changes things. 

Meanwhile, my fancy new Cricut broke.  Yeah, it broke.  I cut maybe 30 things with it and bam. I have no idea what happened.  I have a list of things to try from the manufacturer.  If those troubleshooting ideas don't work, I'll have to send it in to be repaired.  You're thinking warranty right?  Nope, they don't have a record of receiving my handy dandy postcard. 

We're also in the midst of trying to decide what to do with our vehicles.  Our SUV lease is coming due very soon.  It seems none of our options are going to work in our favor.  We are WAY over the allotted milaege on the lease (like several $K over), which is going to hurt us no matter what we do. 

And we're still working on moving.  We did some furniture rearranging and fixing of the dryer-again-today.   Other than that, we are becoming pro's at making more of a mess while you are cleaning things out.  With this 2nd implant stuff, and car stuff, who knows whats going to happen.  If we don't move we face another IEP with our home school district.  Which makes me anxious just thinking about it.

And yes, I miss Gram.  So much I don't even want to write about it tonight. 

I just feel raw. Stripped bare.  Raw with numbness, if that makes any sense.  Its one of those nights that is so overwhelming I can't breathe.  I can't eat.  I can't think about tomorrow.  I can't think about anything really.  I can't think about anything except that fact that it is simply too much.  When do we get to say enough is enough?  Someone just said to me, "Geez, you guys don't ever get a break."  Ya think?

We've always been good with coming up with things that we don't want to hear from people.  Yet, I could never come up with what I wanted them to say.  Until Pea's Mom and I chatted and she said, "It Sucks. I'm Sorry." And that was it.  That is what healed a little piece of my heart.

Sometimes, I don't want to hear that we're the best thing that happened to AJ.  Sometimes. I don't want to hear this was God's plan.  A lot of the time I don't want to hear God will never give you more than you can handle.  Because really, I've had enough and I've told him that several times.  Sometimes, I don't want to hear that I'm a supermom or so wonderful.  Sometimes, I want people to stop making excuses about our situation and just aknowledge reality.  A lot of the time, we don't want to hear there is reason for everything.  I believe this, to a certain point. I know there are positives.  There are also negatives.  I am thankful every day that AJ is a happy, loving, go-lucky little guy and has no idea he's different.  I am angry with how hard our situation is on Jeremy and I.  How it has changed both of us, our relationship with each other, our families, and our friends.  We're done with rush hour.  Oh how we'd love cruise control.  Just for a little while.

As if all of this wasn't raw enough...AJ picked up an infertility brochure I had sitting on the end table in the living room.  (I've been sorting through our files).  Out of all the paperwork sitting on the table, he picks that to walk around with and bring to me.  Insert massive tears. 

Another CP/CI Mom said to me that these years are the hardest, but that we'd start to see the light at the end of this very very long tunnel. 

I hope so.

Stick Figures and Velcro

Grab your coffee, caffinated soda, or a whole pitcher of strawberry margarita and settle in.  This one is a long one...taking me a few days to finish!!

PT: We switched up AJ's kinescio taping.  We were taping from the inside of his foot, around the bottom, up the side, almost to the knee, on both legs.  We were also taping an "upside-down V" above his tush running diagnonally down the top of his tush to the sides of his thighs. 

Sometimes his AFOs and shoes get wet when we don't get to the potty in time.  More than once I have picked him up at school with just socks on.  I mean, clothes and socks.  Meaning no AFOs or shoes.  Just to clarify.  By the time I'd get home, AJ would have his socks off (which was a given) AS WELL as the kinescio tape.  He also started pulling the tape on his thighs while sitting on the potty.  Seeing as the stuff is $18/roll and we use a roll in about 2 weeks if I really stretch it out, this was a big.BIG.problem.

We've been taping him using one long continuous piece-12 squares worth.  The tape comes with a background (white non-stick paper) that has lines/squares marked.  That way I know exactly how much I need each time he needs to be retaped.  We tape from just over the right shoulder, diagonally across his back down to his tush (creating 1/2 of the original "V") on the left side, and wrapped around his left leg, ending just below the back of his knee.  It seems to be working well.  We took a break from taping for about a week, as AJ had scratched himself pretty good where the tape started at his right shoulder.  We gave it time to breath and heal with the help of some triple antiobiotic ointment.

AJ continues to LOVE the treadmill at the clinic.

Last week he did his record best: 10 minutes 17 seconds! Part of that time he spent walking on his hands.  By his choice, not his PT's.  None of us opposed this momentus activity.  He's alternating legs while going up the stairs and actually prefers to hold your hand and step.  His biggest gain: he rolled a ball-multiple times-back and forth across a table. 

We continue to work on balance, stairs, kicking a ball, and jumping.  He's able to get off and on his bed without a step-stool and climb up and down the 2-step stepstool.  He can squat and pick things up better than Jer and I can sometimes.  AJ can walk the entire length of the hallway from his classroom to the front doors of his school, out the door, and up the 6 long stairs up the hill to street.  One of these days I need to remember my camera and video him. 

The only concern we have at the moment is his "cute" floppiness.  The kid knows he's cute.  Often, when you are walking with him, holding one hand, he'll noodle.  And you're left holding him like a corkscrew.  Its really not safe.  He knows you'll hang on to him.  This is a concern and also dangerous since he things its "funny".  He's taken a good number of spills in recent weeks.  He must learn to hold his own body weight functionally. 

OT:  We have increased AJ's constraint therapy to 1 1/2 hours a day.  I'm so thankful he doesn't mind it.  We've had a few questions regarding his constraint therapy....
 
We do this at home ONLY.  We bought the cast outright instead of submitting to insurance and waiting for denial.  Getting online, going to Sammon Preston, clicking "add to cart" and the cast arriving on my doorstep was much easier.  We call it his "Bubble Arm" but its really called a Urias Pressure Splint.  We ordered a child size-16 inches-so he has plenty of room to grow into it.  It was $56 + shipping.  Note: You need a Rx (prescription) in order to do constraint therapy!!!!

His fine-motor skills have improved dramatically.  Occassionally he'll use his right hand only to grab and hold his juice box, just because he's a kid and thats what kids do.  But overall, he's using his left side spontaneously and crossing midline (reaching across to his right to grab something with his left hand).  Crossing midline is just as exciting as when AJ came to midline! 

The other day he put the cap back on the Tylenol bottle.  I was amazed he just knew where it went, and then when it set it on top, I was shocked.  Dare I start probing him to see if he can match things that go together?  AJ is also bearing weight on his left side while side-sitting and is actually using his left hand to help him climb onto things, rather than tucking it under his body and only using his right arm.

Physical Medicine Follow-Up {CP Doctor}: AJ saw his CP doctor at the beginning of february.  Usually AJ's PT comes along so we get the "professional courtesy" of not waiting a good 2 hours to see her.  This happens even when there isn't anyone in the waiting room.  Boggles my mind.  Anyhow, his PT couldn't make it so I was prepared with snacks, toys, activities, galore.  The time from the waiting room to the exam room is quick, but the time in the room can be plain ridiculous.  Especially with an ancy 3 1/2 year old. 

We only had to wait a half hour!  I was so excited.  I was shocked and humbled by the nurse placing us in a room with a regular exam table.  It wasn't the usual room with the therapy table (I call it the bed).  It was a gentle reminder that my little man is indeed, mobile.  He CAN move his body.  He CAN walk.

AJ and I sorted sssssocks and sssssnakes on the floor while we waited.  I even got the chance to educate the nurse on cochlear implant.  She was very interested and I was happy to oblige. His CP doctor was very impressed with how he's doing.  She gave us the prescription for constraint therapy and said no to botox.  Yes, I said botox.  How does botox work in patients with cerebral palsy? Given in small doses, the botox relaxes the muscles and reduces stiffness. Less rigidity, less spasticity.  Botox treatment in CP patients is still controversial.  Sounds like CIs in the world of hearing loss, hey? AJ has enough rotation in his foot that he doesn't need botox right now.  We'll revisit the idea in July at his next follow-up.  

The concern is his left foot and how it continues to turn in.  She watched him walk barefoot multiple times and noted that it doesn't turn in all the time.  I thought that was interesting.  It turns in, then straight, in, then straight.  She suggested continuing taping (as long as its working), continuing the exercises and deep massage, and showed me where to watch for stiffness in his foot.  We finally heard the results of his baseline x-rays, done last fall.  Results were normal.  Whew.  Hips, pelvis, and all that jazz were just fine. 

We discussed speech therapy, she was shocked he wasn't in therapy outside of school.  She saw no reason for us not to approach insurance with the need for speech therapy for medical reasons, not the whole hearing/listening/speaking component.  I shared "the news" with her (see "the news" below in CI subject header), to which she wrote me a prescription for speech therapy 4-5 times per week for the summer.  *Smile*

Neurology Follow-Up: Fantastic! AJ is progressing nicely.  His neuro was not concerned about his development, he thought he was doing phenomonally well given all that he has overcome.  So as far as development is concerned: Poop on you Mr. Development Specialist who only sees my kid once a year. He also was shocked AJ was not in speech outside of school  Ugh!!!!!!! Frustration continues to build.  Can you tell?  He made sure to write in his report that AJ should be receiving speech for medical reasons. 

AJ's head grew, which means his brain is growing appropriately.  This is always our biggest concern at the neuro. AJ also weighed in at 23 lbs 6 oz, which thrilled me.   I know what I say about different scales, but I'll take it!  All in all it was a great visit.  We got another free pass to come back in a year. 

CI 9-month Follow-Up:  His CI Audi did an ESRT (Electrical Stimulus Response Test) instead of regular audiogram.  The ESRT consisted of a small probe (like the ones they use with tympanometers to do tympanograms on those with hearing loss).  The probe was connected by wires to a cuff  that his audi wore around her arm. The wires continued from the cuff to the machine his other audi was running.  The point of the cuff is to keep the wires as still as possible.  Each time the probe was placed properly and the test was running as is should, the light would be green.  If he moved or the probe came out just a slight bit, it would flash orange. 

Movement screws up the results.  Fanstastic for a 3 1/2 year old.  Who doesn't like movies.  And doesn't have patience for toys that don't work or a lack of bubble juice.   Moving on....  All in all he did do very well.  They were hoping to test 2 of his electrodes, they got 7!  The ESRT gives them a better idea of where AJ's sound threshholds are, since he's not the greatest booth tester.  He was given a new map, which he needs to try out for at least a month.  It's working like a charm!

And "the news" is: AJ is getting his 2nd cochlear implant.  His left ear testing is coming up soon and we'll meet his surgeon at the end of next month.  I'm still sad his original ENT/Surgeon isn't with CHW anymore.  *Sniff Sniff*

If things move as they should, he should have his implant surgery this summer.  We are pretty sure AJ's primary insurance will cover (as I've already spoken to them about it multiple times), but unsure about T19.  They haven't been responding to CHW very quickly.  That's ok.  If we need to, we'll fight 'em till we win-again.

T19/Medicaid:  We were still waiting on the PA for the speech that was ordered following his swallow study. Yeah.  Needless to say the PA request was cancelled as we are moving in a different direction (see speech subject header below).  We also received our yearly packet of forms for his state insurance.  This year requires a home visit.  Which doesn't really make me nervous, as I know he'll qualify, but I still have this pit in the bottom of my stomach about it.  Having T19 as AJ's secondary insurance has been such a blessing, the paperwork is beyond worth it.

School:  I don't know where to start with this one.  We had a wonderful "pow-wow" with AJ's teacher a few weeks ago.  It.was.awesome.  We were able to review the communication assessment she and his school SLP did following the video assessment for the emc3 curriculum. AJ is at what I would call an in- between stage with his communication.  He's mostly using gestures or movements to communicate.  Our goal is to move him toward symbolic communication.  What is symbolic communication?

The biggest thing I took from that meeting was answer to my question of "Why?".  Ok, one of my answers to my many questions of "Why?"  I've always been confused as to why, even though AJ's been exposed to sign language since 18 months old, he's still not signing or communicating.  His teacher LITERALLY drew a stick figure to represent AJ.  We figured out how old his eyes are.  How old his "ear" is.  Where is his hand function (fine motor)?  His walking, etc. (gross motor)?

I had this moment of clarity. 
Ear: 10 months
Eyes: 8 months
Fine Motor: 18-24 months
Gross Motor: 14-15 months
*Motors are estimates, they change and don't account for his scattered skills in higher functioning areas

AJ is truly all over the board with his skills. And that's OK. I'm working on a nice drawing of him as a stick figure, holding these numbers.  I'm going to frame it.  To keep my line of focus. And as he changes, we can change the numbers.  I'm thinking this will be a positive thing for all of us.

AJ's teacher also had the Waukesha School District Vision Specialist come and hang out with AJ.  I happened to run into her a few days later while picking up AJ from school.  It was wonderful to chat with her in person.  She felt there was no issues with his acuity (picked up a grain of white rice off the tray immediately).  However, when presented with pictures, he just picked them up and played with them like a toy.   If something didn't hold his interest, he'd zone off looking at the lights or around the room. Typical AJ.  She wasn't sure about the pictures, if he just wasn't developmentally ready, or it was something else. 

On my drive home that day, I had an epiphany.  AJ was really never exposed to pictures.  Like, here's a picture of a ball, truck, and apple.  AJ, where's the apple?  He couldn't hear! He couldn't see properly!  There was one book with pictures he loved, but it was a chipboard book with 9 pictures to one page.  He was fascinated with the food page.  He wasn't exposed to books or pictures continuously unitl he was home here with us.  We just never did the picture book thing.  I know, bad Mommy.  Bad Daddy.  But honestly, AJ was so trapped in his little world, there were some things that we just didn't do.  He's just now enjoying books and beginning to continuously visually attend to them.

I shared my thoughts with AJ's teacher about his limited exposure to pictures.  I also shared how he loves his "AJ" and "Family" experience books.  Those have pictures of him doing his daily routine and pictures of our family.  Picture concepts : On My To-Do List.

We had AJ's parent/teacher conference this last week.  Things have changed.  Oh, have things changed.  It's simply wonderful.  We heard from AJ's PT, OT, and SLP at school.  After probing AJ, it was suggested that we begin helping AJ communicate with the use of physical objects.  We had discussed a switch or picture boards, etc. before, but it was agreed that this would be the most beneficial place for him to start. 

The awesome thing?  He's already doing it!  The day before the conference, AJ went into the garbage (it was uncovered) and grabbed a tv dinner box.  He brought it to me.  Translation: Mom, I'm hungry.  Wednesday, he brought me a fork.  Translation: Mom, I'm hungry.   Today: He brought me his coat.  Twice. Translation: Mom, I want to go bye-bye. 

The idea is to pair an object with an activity or items in his daily routine.  I was able to watch AJ communicate using this technique with two vibrating toothbrushes (lets call them VT A&B)  at school. His SLP held VT-A (vibrating) behind his CI processor.  He heard it, located (non-vibrating) VT-B sitting the table in front of him, grabbed it, and handed it to his SLP, who then said "Oh, you want the toothbrush", giving him VT-A (vibrating).  This can be used with just a single object, or two. 

We have been struggling and struggling to figure out a way to help AJ tell us when he has to go potty.  I think for both Jer and I, as well as his professional staff, it is one of the most frustrating things right now.  Not in a bad way, but I know its on all of our minds.  His teacher came up with using a travel pack of wipes.  GENIUS!  We keep them on the end table in the living room.  When we go potty, we take him to the table, grab the pack, walk to the bathroom, make sure he can visually attend to it at some point when he's in there, then take it with us back to the table when we're finished. We've decided to do 4 of each object (well, for most of them).  One for home, one for in the car/out and about, one for school, and one for 'Drama's house.  I've washed one of each of  AJ's empty milk, juice, and water containers.  We will velcro those to the front of the fridge. That way, he can go and grab what he wants and tell us what he wants.  It also increases his exposure to making choices. 

We still have a list of things, like how do we represent bedtime with an object, and multiples of the same object.  We need to keep these items in the same place all the time, so he knows where they are.  All in all, we are very excited, as he seems to be picking it up quickly.

AJ is interacting more and more with his peers.  They had snowcones for snack last week. I watched, from afar, how he did during the entire snacktime.  He watched the other kids as they ate their snowcones.  He heard one of his peers, when she spoke rather softly, and was 3 seats away from him. He turned to her immediately.  He attened to the blender when it would turn off and on. He participated and displayed patience when they felt, scooped, and blended the ice.  He's become more and more...of a big boy. And I absolutely love it.

I did see how easy it is for AJ to loss or not give visual attention in his school setting.  No matter what communication mode you choose, visual attention is required for all learners.  I'm not talking about lip or speech reading or any of that.  You kinda gotta look at what your doing, right?  Sure, I could tie my shoe now without looking and probably find success.  But when learning, you have to look at that big wooden shoe cut-out and look at where you are putting the laces.  AJ struggles with that idea.  And when I realized his eyes are only a few months old, its all making sense.  His teacher is anxious to hear what AJ's eye doctor has to say. 

Eye Doctor:  We finally have a follow-up scheduled again.  That office must think I am an awful parent-with our cancellations and rescheduling.  Oh well.  Life happens, and I always given them plenty of notice!  I'm anxious to see what she says as well.  This is techically a post-op visit.  She'll be filling out a referral sheet for AJ's teacher, so I'm trying to remain positive.  No matter the outcome, I can only see the information as being helpful, not harmful.

Speech:  After much discussion between Jer and I, AJ's teacher and SLP at school, AJ's former SLP(s) at CHW, his CP doc, his neurologist, and his private PT and OT....AJ will be receiving outside speech and feeding therapy from HealthReach Rehabilitation (the same clinic his PT/OT are).   We have his initial evaluation next week.  The SLP we have chosen is phenomenal.  I have seen her treat firsthand. Multiple times. I believe she is going to be a great fit for AJ (and me). 

To top that off, AJ is going to be eval'ed by another world renowned therapist.  I literally have chills about this.  Some of you may remember that AJ was treated by another rock-star therapist, TWICE.  She is  a PT.  This time, its an SLP.  Jer and I, as well as AJ's entire team, are thrilled about this opportunity.  I can't wait to see what she has to say!

In Other News: AJ continues to do well with potty training.  He averages one accident per day.  Over the last two days, he's gone to the potty and sat down on his own.  This is a huge gain! He did it again this morning and I just had my mouth hanging open.  **Update: This afternoon he walked into the bathroom by himself, closed the door, went and sat on the potty (after he sort of tried to pull down his undies) and went potty!  All by himself.  *BIG CHESTER CHEETO GRIN*

We will be posting information regarding the first HLAA Walk 4 Hearing here in Milwaukee in May.  We have created a team and will be walking for AJ and to help spread awareness about hearing loss.  We hope you'll walk with us or donate! Stay Tuned! 

We are submitting a scholarship application to the AG Bell Convention in Orlando, FL in June.  We are hoping we will be approved and will be able to attend this fabulous national convention.  Wish us luck!

We are also in full swing, planning AJ's 4th birthday party.  Am I the only person who thinks there is a huge difference between 3 and 4?  It's going to be a 'sports theme'.  Hm, I wonder why....

Our house is no where near ready.  So much for our goal of March 1st.  We'll get there, right?

I was asked to be on the committee for the Center for the Deaf and Hard of Hearing's annual fundraiser "Tasting Tuesday".  I am so excited!  Our first meeting is this week and I am hoping to contribute as much as I can to this event. 

I think that's enough, don't you?

Whats Goin' On

Recently I have been tempted to delete this blog.  Yes, I said delete, finish, adios blogging world. After a long discussion, Jer and I both agreed not to do so, but I still feel like I need to get a few things off my chest.

This blog was meant to be a journal of our feelings, keep everyone updated on AJ's progress, and with the thought we might help other CI/CP families.  Lately, I feel like our blog has served only one of those goals, and served it half-heartedly.  It's been AJ's progress "mass updates" galore. 

Does anyone read this crap?
I often wonder if anyone (other than the, eh, 10 or so people I know for sure do) reads this blog and what they think.  I have the same commenters most of the time (my CI Momma's!), but I wonder about the lurkers and pass-by-ers.  That's not even a word.  Oh well.  You know what I mean.  Its also what I think when I contemplate writing a book.  While others have said, "Your wife should write a book!", I'm not so sure people want to hear our story.  "Adoption Gone Wrong." Doesn't exactly have the same ring as "Girls Gone Wild," you know?  I don't know, I just wonder.

Our feelings...
 Eh.  You don't know the half of it.  While we try not to sugar coat as we did on the previous website, we certainly don't share all of it.  Sure, I can calmly call someone on the phone and  tell them a "not so great" update on AJ without crying.  What you don't know is how long I've cried beforhand and how many times I've rehearsed my words before I've placed that call.  If I've lost my mojo on a particular day, I'm still a champ at crying silently while on the phone. I can type the facts and let you have a tiny glimpse of  my feelings on the subject.  I've taken to writing mass updates a few days after an appointment or event; I find it easier to write in a factual manner. 

"How do you do it?" & "How do you keep everything straight?"
I don't know.  I really don't know.  No, I have not magically found more hours in the day. No I am NOT AMAZING.  I do not feel like a supermom.  I do what I have to do.  How do I keep it straight?  I guess I was given an elephant's memory and organizational skills for a reason.  I'm not perfect.  I could be way more organized in regards to AJ.  Can you see the pile of papers I have sitting here to be filed in his color-coded binders?  The good days give me a natural energy boost to get through until the next few bad days pull me down.  The rollercoaster continues.

"It is what it is."
You've all heard us say this before.  But honestly, it shouldn't have been.  I know, I know, you're tired of hearing about the first 13 months of his life.  Well, today my friends, my answer is too bad. Yes, this could have happened if we had had a biological child, BUT, there is one major difference.  We would have known from the beginning.  We were lied to.  That is a grief that sticks with you.  Believe us, we wish it would go away.  This is our reality, we don't get to just step away from it and pretend it doesn't exist. So it isn't what it is.  It was not fair.  It was wrong.  We are still grieving and no, I don't know how long we will do so.  I do know that it is part of the process and unless you walked the journey that we have with AJ, please, don't judge.  Please, don't assume that just because AJ is thriving all is perfect.  We can't forget about what happened.  We are reminded every day. Saying "it is what it is" might be our way of brushing the subject to the side, praying to God you'll talk about something else after that akward moment occurs where you don't know what to say to us.

Often, the 5 minute breaks, afternoons with a sitter, or even the rare overnight get-away trip just isn't enough.  I'm just now able to admit that to other people.  We don't go on fancy vacations.  We don't go on vacations period.  Jeremy and I haven't had a vacation in 4 years.  The idea of a family vacation is very scary to us.  Family vacation wise, I think water park. Fun, right?  Eh.  This is what I think 1) AJ loves water YAY! 2) Sensory Intergation Dysfunction overload crazy, crying, freaking out child who is beyond consoling and screaming in a hotel room 3) AJ out of his environment and routine 4) Don't even get me thinking about putting him on a plane again.  While his ENT has assured me he'd be fine on a plane (unless he had another URI) he was "supposed" to be fine when we flew home with him and I just not ready to roll those dice again just yet. Now I am all for taking AJ out of his environment, but at a pace he can thrive in, not a pace that will send him flying like a bucking bronco into a world of chaos.

You have no idea how I longed for him to be at the pool and eating popsicles with other kids this summer.  How I wished my only "scheduled" activity with him was a playdate with Lucy Lu down the street (Lucy Lu doesn't exist, just an example).  You didn't see the tears roll down my eyes as I saw other children running around the playground, asking their Mommy's for more 'uice (juice).   You didn't feel my Mommy pain when I realized AJ could not attend a bouncy house party because adults are not allowed to accompany the children on the apparatus', and he is not able to play on them himself yet.  Lord knows he'd want to climb up there and how could I deny him that?  You don't feel my slight jealousy and feel my heart breaking when I see other children developing normally.  The pain is there peeps, I just try to hide it. We both do.

AJ's needs are consuming.  Parenting a special needs child and balancing your marriage is tougher than it looks.  I may offend people here, but to me, special needs parenting is a whole lot harder that parenting a typical child.  There, I said it. People have often said we make it look easy.  Well, thanks for the compliment, but it certainly is not. One of the two usually suffers.  It's only natural.  It takes a lot to make the scale balance evenly, when most of the time its just not going to.  Every move we make revolves around AJ. 

What's so odd is that AJ sort of has nothing to do with the whole thing. Confused?  Me too. We love him, no matter what AJ, his soul and personality are brilliant. His issues are what cause the stress.  How can I compartmentalize it?  I don't know. I do know that  I have to stop blowing his issues and what we do off like they are nothing.  Contrary to popular belief, they are not going to just magically "go away." Even though I know they are a lot to deal with, I think nothing of adding another therapy on to what is already a busy schedule.  If he needs it, then we do it.  In the moment, I'm Advocate Mommy. Its in the aftermath I turn into Just Mommy and am fighting off the tears.

"No one can do what you do"
A great friend told me this a few months ago.  At first I took it as a compliment and was humbled by the thought.  Then I had an intern mini panic attack.  Oh my. Thinking about what would happen to AJ if something happened to Jer and I together, is, ah-hem, nothing short of terrifying.  While neither of us plan on going anywhere, I still feel its important to plan and know what we'd want for him, heaven forbid that day would come.   Its not as simple as "Oh, my sister would get the kids, would go to their school, blah blah blah, done deal." Nope.  AJ is a whole different ball of wax. Let's just say no one is volunteering-and this whole idea scares me. 

"Yes, I know its all I talk about."
My friends who listen to me go on about all of AJ's world and really have no idea what in blazes I'm talking about.  I know, I know.  It IS all I talk about. That is because AJ is my life.  Right or wrong, I'm sure you'll make that decision for me. When we decided to have kids, we both wanted me to stay home with Baby. It was a wise decision, as I became AJ's assistant.  While I love my job, it is beyond demading and consuming.  So I'm not the bar-hopping 28 year old.  I'm the "wow your so young" special needs mom.  Don't knock me when I'm obsessed with New Kids on the Block or Twilight, because for me, that is my escape.  My escapes to vegetarian vampires and meeting dreamy boy band members allow me to think of things other than therapy appointments and why my son isn't talking.

I've decided to take a break from the blogging world.  I'm thinking I'll still post occassionally, but I won't touch on AJ's progress until I feel ready again. We're going to light and fluffy people, because the serious stuff , I just don't feel like sharing right now.

 If you've been reading recently, we are exploring a new curriculum for AJ at school to help him to communicate.  While I would never want my child's life to be smooth sailing (no building of character on that route) I do wish things were a bit easier for AJ. IT.BREAKS.MY.HEART that my sweet baby boy is not talking.  I'm beginning to wonder if I'll ever hear him say Mommy or I love you.  Such simple words to you and I. I would move mountains to hear those words. 

And so I will. 
And so we will. 
BECAUSE.ITS.WHAT.WE.DO.