Tuesday, January 26, 2010

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. 

Friday, January 22, 2010

Lavender and Horseradish

On Monday I had the opportunity to view the video assessment on AJ.  The assessment took him through a sensory journey.  I sort of chuckle at that thought, since that is exactly what the gal's at the spa say to me just before a massage.  They tell me to close my eyes and proceed to swoop different essential oils under my nose.  So I guess this was AJ's version of the spa?  Hm.  I'm not sure he'd agree, even though he sat for a very long time and did not complain.

Below are the "Sensory Journeys" AJ participated in along with how each was presented in { } :
Tactile {rubbed hands with dry washcloth/back scratch}
Vestibular {rocked side to side/front to back, rotary, up and down}
Olfactory {smelled familiar smell: shaving cream/novel smell: lavender oil}
Gustatory {tasted brown sugar, lemon, dill pickle, cumin, horseradish, alum}
Auditory {listened to recorder/clicker}
Proprioceptive {bear hug/vibration}
Visual {Elmo puppet/foil pom-pom}

While watching, I scored the assessment, just as his school team did when they watched it.  We compared scores...we all seemed to score just about the same.  We then discussed, at length, the program's design and how it would benefit AJ. It is amazing how sensory intergration and communication are linked together. 

AJ is now 3 1/2.  He needs, and deserves a more symbolic mode of communication.  The video did show him communicating.  It was remarkable.  He had mostly purposeful responses.  At this time we are not pursuing additional private speech therapy.  I think I was missing the big picture here for a while.  This is MORE than the Lings, speech sounds etc.  He needs "A" form of communication, since clearly, he is trying to communicate to us. 

We've decided to try a switch with AJ to help him communicate. We are moving forward with the Every Move Counts Clicks Chats (emc3) curriculum and will meet with AJ's school team in March (end of Quarter 1) to see how he's done under this curriculum. I really want to order the manual  for emc3.  I was excited to see that its available on the website. We are keeping in close contact with AJ's teacher and his SLP in efforts to continue what he's doing in school here at home. He will continue with his speech and auditory program at school-that is not changing!  We are hoping the switch will serve as a bridge to symbolic communication for AJ. 

I had the rare opportunity to see AJ in action at school one day this week, and was even able to sit in on his speech session.  He was nothing short of amazing.  By sitting in on his speech session, I know we are looking for the p, b, m sounds and how to encourage those. Guess what I heard this morning? A "BUH". :) I also heard a "GUH" and "AH-MMMMMMM" with an open then closed mouth, which is what his SLP said she was starting to notice.  I've got little notepads everywhere so when I hear a new sound, I can jot it down.  I'm notorious for saying he's making new/different sounds and then not being able to repeat them!  His auditory skills are exploding daily.  He found me in the office the other day when I was calling his name.  He was in the living room. 

While his team has been telling me he's doing well, it was awesome to see him in action.  He's changing and growing, and for that I am thankful. 
Oh, the Lavender and Horseradish?  They say lavender is calming.  You betcha!  His response to lavender was just that, his eyes widened and he had this sense of calm.  And, he liked the horseradish.  Eww!

Friday, January 15, 2010

Puzzle Pieces

While wriitng an email to AJ's teacher last night, I reminded myself that I promised to update AJ's gains.  I also realized that our little man has changed quite a bit over the last few weeks.  I'd say it started during winter break and has continued.  He seems more in tune with his environment, his eye contact continues to improve on a daily basis, and in general, he's just happier.  The biggest thing yet:  He had an entire week of good days at school.  AMAZING.

 So let's see what he's up to:

We began potty training the Monday after Christmas.  And YES, we kept it quiet as far as the blog goes.  I guess I didn't want to jinx the idea.  Having a child with cerebral palsy and thinking about potty training is scary.  Muscle issues + bladder control....um, is this going to work? 

For AJ, it has.  He has done considerably better than we had expected.  YAY!   For those of you that are curious as to how we are training him, I'll put that in a separate post.   I figured that the time off of school was a great time to commit and be consistent with the potty idea.  Since school started up again, he's been there 6 days with no accidents, and has gone on the potty at school.  GO AJ!

He is not yet able to tell us when he has to go, but if anything, we thought this could be yet another opportunity for AJ to learn to communicate with us.  He has signs of when he has to go and that first week gave us an idea of "when" he goes, so I think we have a good start.  The dogs are very confused with this whole potty training thing.  They don't understand why I say "do you have to go potty" 1,268 times a day and when I say it I don't take them out.  Rocky has designated himself as the potty helper, as he comes in, gives AJ a "good luck going potty smooch" and then leaves.  Oiy.

I would much rather rinse out cute "Big Boy" undies and pants and do more laundry then change pull-ups though.  It thrills me to no end that we use 1, yes, thats ONE, pull-up a day-at night when he goes to bed. 

The potty training has also lead to AJ being more aware of his lower extremities.  He has struggled with dressing in standing due to his balance/coordination.  It was difficult for him to stand and bend over/squat down to pull up his pants.  With the potty training, he was taking his undies off and putting them on while sitting down, which lead to his discovery of hey, I'm supposed to pull these things up.  We had a PT/OT session where they worked on dressing in standing, and getting up from a stool (to mimick the potty chair) and its like he's a new kid.  He GETS IT.

It took a while to get him to visually pay attention to what he's doing.  If you've ever dressed AJ, he will gladly lift his foot/legs for socks/pants, but won't look down at what he's doing.  He now has the visual piece of it.  He's now able to stand against the couch and get dressed in standing, including pushing his feet down into his AFOs and shoes.  He is also able to assist with taking off his AFOs and shoes, including velcro  straps and sliding his foot and lower leg out of the plastic AFOs. Which blows my mind, honestly.  Ever since winter rolled around, he's been in love with his jacket and mittens.  Oh the mittens.  How he loves to put them on (he giggles when he hands them to you) and take them off.  AJ has made considerable gains in dressing!!

His left leg seems to be looser.  His arm is still a bit tight, along with more fisting in his left hand than I've seen in a while.  I saw an idea of another blog about a Montessori fine-motor activity that I want to try with AJ to see it that will help.  For now, we just keep offering things to him to the left, doing lots of two-handed activities, using the air cast, and his hand splint.  He took a stroke with a paint brush at school the other day-which was nothing short of amazing.  I wish I could have been there to see it.  :)

The boy has developed patience.  I never thought I'd say it.  In general, he's a lot calmer and zen-like most of the time.  When it comes to toys, he spends a bit more time trying to figure them out himself.  If he can't, he brings it to us and we verbally identify the object and then ask if he wants it "on" or whatever, followed by the attempt to get him to vocalize for it or sign "on". 

He has some huge auditory gains.  He will be in his room, hear me turn on the vacuuum in the living room (down the hall) and come running.  That's called sound discrimination folks.  He knows when the dogs bark it means some one is coming in the door.  He recognizes the voice of Handy Manny (cartoon) on the TV, which astounds me.  Its the only show he'll watch at least part of.  Oh I lied.  Mickey Mouse Clubhouse is the other.  According to his teacher, he's turning to novel sounds at school very quickly. He knows the difference between voices, he recongizes who people are (you can see it in his face).  Yesterday, one of our sitters, (who hasn't been here in a while) came.  He saw her sitting there, stared at her for a moment, then got a big smile on his face and speed-walked over to her. 

Feeding wise, I've seen some fantastic rotary chewing.  He was given a straw a bit too much over break, so he's battling with us about open cups, but hey, my kids drinking out of a straw.  Come 'on.  I stick to my theory, he'll drink when he's thirsty.  (Still no word on insurance approving more feeding therapy)

AJ's communication is the missing puzzle piece.  There are fragments here and there.  I'm calling them fragments for a reason.  Many have asked me why this is such a big deal.  Um, HELLO!  AJ needs to communicate in the world around him.  Effectively communicate.  That means, a stranger or peer needs to be able to understand him. Right now, only those close to him understand his non-verbal cues.   Sometimes the things people say to me blow.my.mind.

So the fragments we are seeing...he has been pulling/leading us to things.  If he wants something thats in a different room than where he and I are, he takes my hand and leads me to where he thinks we should go.  If he wants me and I'M in a different room, he comes and LOOKS FOR ME.  Huge!!  He got up from the potty last week, grabbed my hand, walked three steps, and looked up at the sink.  Translation: "Mom, I want to wash my hands."  Grabs my and and walks to his booster chair in the kitchen.  Translation: "Mom, I want to eat."  We are getting closer.  We just need that hook, line, and sinker. 

The video assessment for the Every Move Counts curriculum was done on Monday.  I was a wreck driving around Waukesha running errands that morning.  Hoping and praying he would do well.  Oh who am I kidding.  I was hoping he'd be a rock star and show off!  He did very well and I was thrilled to meet the EI that lead the assessment.  AJ's school team has reviewed the video.  It was very enlightening and apparently educated them a lot of AJ's communication.  On Monday we'll be viewing the video, and I am more than anxious to see it.  One step closer to completing the puzzle.

Wednesday, January 13, 2010

In Which I Multitask a Little Too Well...

Actually, I think this post should be entitled, "In which I drag Jer to every dance imaginable."


First off I am a total nerd.  I heard this song (which is now playing as you read) on the radio yesterday and had instant flashbacks to pop-music-that-makes-you-feel-like-dancing-while-driving-because-you-are-so-in-love-with-your boyfriend-and-the-song-is-SO-talking-about-the-two-of you.  So I sucked it up, and then some. Here is the original picture I mentioned in my previous post:

Winter 2000-College Dance

As if that isn't embarrassing enough, I went on to find more pictures. Pictures of us during our dating days and yes, most of the dances I dragged Jer too. I was still in high school when we met, so he really should have just bought a tuxedo like everyone joked he should do.

Homecoming 1997-Newly Dating-Aren't we Cute?

Prom 1998

July 1998-1 year dating anniversary-Hello Legs!

January 1999

Sweetheart's Dance-1999

Prom 1999

June 2001-Wedding

Honey, I think I'm going to give you a pass to wear flight pants and t-shirts whenever you want.  Seriously. :)

Monday, January 11, 2010

Let's Lighten the Mood, Shall We?

Oiy. That Normal Expectations was a doosy of a post. I guess I really needed to vent. Thanks to my CI Mommas for their awesome comments and unrelenting support!!

Let's lighten the mood, shall we?

1) I'm working on a list of gains AJ has made in the last few weeks, as well as things we are working on. It will probably be another "mass update".

2)I stumbled upon something in the basement...and a lightbulb went off! Wait till I share the more cost-effective substitute for my grand plan of putting a white board in our hallway. Genius I tell you, genius!

3) After almost a year of no new posts, I finally updated my stamping and crafting blog: www.stampwithheidi.blogspot.com

Check it out! I've been in quite a creative mood lately, so here's hoping I can keep it going!!

Until then, here's Mr. Winter himself, playing "at" the snowbanks on the sides of our driveway.

Sunday, January 10, 2010

A Whole Decade & A New Year

We've had quite a decade as a couple. In 2000, I was a college freshman and Jer was about to propose (late January). I recently found a picture of us from my university's winter dance that year. *Sigh* Maybe if I get enough guts I'll scan the picture and post it. We look so young, so fresh-faced. Ready to take on the world. And we look happy. So darn happy.

We figured out that only three really good things happened in this decade:
We got married
We became parents to AJ
AJ's ability to hear via cochlear implant

That's about all folks. Of course there were smaller things that were good, but those are the main three. The rest of it was plagued with memories that we'd both love to forget. There is a reason people tell us we don't act like 20-somethings...more like late 30-somethings.

We play hermits every New Year's Eve and stay in. We find it mind-numbingly relaxing to stay in and do absolutely nothing. I made entirely too much food, so we ate the appetizers and some of the dessert, leaving the main course for the next day. We watched movies and managed to stay up until midnight. Hooray for staying up with the big people.

AJ rung in the New Year just after dinner that night. I bought some noisemakers at the store just to see what he would do. He laughed hysterically the first time he heard me do it. Of course I didn't get that on video. But he did giggle again when Daddy did it, so I managed to capture that, and AJ's own attempt at using his noisemaker. (He has since figured out the plastic part goes in your mouth)

**I can't seem to load videos right now-so I'll keep trying!**

We're not big on resolutions around here. We've just decided that 2010 is going to be a fresh start. Simple as that. Happy New Year!

Friday, January 8, 2010

Normal Expectations

A few posts ago I mentioned that AJ's teacher wanted to explore a specific curriculum for AJ. The curriculum is called Every Move Counts. The entire school team that works with AJ met with another district EI teacher who uses the curriculum to discuss the program, the assessment,what it includes, and AJ (of course) this past Tuesday. It was, apparently, a very productive meeting.

The first part is to conduct a video assessment of AJ. It will be a 30 minute assessment where they take him through multiple sensory experiences. The assessment will be on Monday. The team will review the video that afternoon after school, and the following Monday we will watch the video along with AJ's team here at our home during our monthly home visit. We are anxious to see what this assessment will show not only us, but AJ's school team. While I know I don't need to say it, I am thankful every day for AJ's school, his program, and his team. They continually go above and beyond to help my son. That is priceless.

This curriculum was suggested since AJ is making gains in every area except communication.

This fact is literally, breaking my heart.

I find such odd parallels in AJ's adoption journey and AJ's cochlear implant journey. We spent so much time defending the Guatemalan adoption process, defending his small size, so much time creating a pretty, happy story. So much time explaining facts and how it would be when he came home. Giving rules and sharing normal expectations.

When we were anxiously awaiting AJ's CI surgery, we spent months defending our decision, trying to explain how a cochlear implant works. Giving repititive corrections about when he would hear and how he would hear. Providing a "loose" timeline of when he would start understanding speech, making sounds, and hopefully talking. So much time creating a pretty, happy story. Giving rules and sharing normal expectations.

I think its safe to say that Jeremy and I are no longer allowed to have normal expectations.

While we never thought his cochlear implant was a "fix", we certainly had what we thought were very realistic expectations. AJ is a smart little boy. So why isn't he making sounds or babbling yet? Note: I'm not saying we think he should be saying 4 word sentences. This is a realistic question. At this point, 8 months post-activation, we should be seeing more. His auditory gains are pretty much on point, but whats with the lack of communication? There is no verbal, no signing, really. AJ's preschool program allows us to be around a lot of other kiddos with CIs (and HAs), which is wonderful. I smile each time I see the older grade schoolers running to the office in the morning, some with CIs or HAs and some with neither, and its just the norm. But it also shows me just how far behind AJ is. Its like his class is running through a jungle, some fast, some slow, and AJ's stuck in the quicksand.

At the back of my head is this stupid chromo testing. I called the insurance verifier at the Child Development Center to see if she had heard anything. Turns out we have the one of the slowest insurances to respond. Fantastic. I was told that T19 will pay for it, but we need the approval or denial from our primary first. Sound familiar?

What if there is something else going on? Maybe his brain is not functioning correctly. I hate to say it, but there it is. Are some receptors not working? While I know the past is impossible to change, all of this had made me yearn for a different experience. FOR AJ, not for me. I wish we could have been there from the beginning, right after his birth. Spoke to his birthmom about her pregnancy. Spoke to the doctors after he transferred to the hospital. Been with him in the NICU. We'd know what happened. It frustrated me to no end that we don't know. What happened while you were in Guatemala? A question that will remain unanswered.

AJ's activation came at an odd time. He phased out of Birth to 3 just 2 months after activation. He had less speech therapy than I would have liked. Why didn't I realize this then? Should we have dropped the sign? All this time and he only has one sign does consistently. Sure we've gotten others, but not they are not consistent. signing now? Should we not focus on signing so much? Is it motor or cognitive? What he understands auditorily is passing up the signs he knows. Sometimes he has difficulty using his vision to pay attention to a task, etc. Should I have him in private therapy outside of school. What can we do different? WHAT AM I MISSING? Pardon my babbling. It helps when its not all in my head.

No one wants to hear that their child is not doing something. Communication is essential to life. Communication is critical. This is a big issue, this isn't "Johnny doesn't like to share." I'm terrified about all of this. Yes, Mel, I used that word. I really am. I don't have the answers, and that frustrates the *#@( out of me.

Directions for Leaving a Comment:

Scroll down to the bottom the post you wish to comment on. You will see the time/date stamp on the bottom along with the number of comments and a small envelope. Do NOT click on the envelope! Click on the "0 Comments".

A text box will appear for you to write your comment. You can use Anonymous, just leave your name at the end of your comment so we know who you are! Thanks!