Eight Years

The first morning of preschool wrecked me. His adoption and homecoming had only been 23 months earlier. That may seem like a lifetime to some, but to me it flew. Three weeks after he came home my calendar exploded into a slew of appointments every week. His diagnoses came, as did the visceral effort to give him everything he needed. It was like a run away festival ride and I was hanging on for dear life. He needed so much and we were moving at warp speed. I giggle at myself as back then he only held cerebral palsy, failure to thrive, and deafness as his diagnoses.

We lived in a different school district and had done extensive research as to what AJ would need. We decided to advocate for AJ to go to a different school in a different district. The other school had a preschool program with kids with hearing loss who were choosing  to hear via technology (cochlear implants or hearing aides) and use spoken language.

We walked into his first IEP meeting with binders for each of the thirteen people present.. We had been encouraged to make a pamphlet or information packet about AJ so that staff would know who we were having this IEP for, That meeting rocked us to our core. It went on for hours without any resolve. The meeting was a bit more stressed then a typical first IEP as we came out swinging for him him to go somewhere else. Our home district did not understand hearing loss or what AJ needed. It was our first taste of truly fighting for what AJ needed. Looking back, I'm glad we walked into that initial fire. The experience taught us well.

After two more rounds of meetings AJ was approved to attend this preschool program for DHH (deaf hard of hearing) students. We walked him into the classroom on the first day and he settled in. Looking back, he was just a baby. He was wearing infant clothes and much smaller than his peers. MUCH. He had just had his first cochlear implant activated four months earlier. He had only been hearing for four months. He had just started walking a few months earlier.

First Day of Preschool

I walked out of the building and walked to my car. Sobbing. A full on sob that nothing will stop and that a hug would have made worse. One of those. I had no idea what to do with myself.

I can't remember what I did that day. His preschool program was only 2.5 hours long, so for the two years he attended that program I stayed in town. I went to the library and wrote, went to Target, and sat in parking lots. The almost hour drive home and back wasn't worth it.  His teachers worked TIRELESSLY to understand him. They brought in every resource they could and gave him the support he needed.

His second year of preschool was a doozie. That fall AJ had a seizure in the car on the way to school and was diagnosed with epilepsy. I remember the morning after clear as a bell. His teacher greeted me at the door, gave me a mommy to mommy hug and asked if there was anything I needed. I, of course, said no. When it comes to AJ, I do what he needs first and process the emotions later. But I have never forgetten her kindess. This was also then year he received his second cochlear implant. His class made cards for him, which his teachers brought to his hospital room when they visited post-surgery. Jeremy was diagnosed with MS a few days before the end of the school year. AJ's staff was incredibly understanding as we navigated tests and appointments and treatments. They encouraged us to attend the zoo field trip in the midst of all this chaos because even though we didn't know we needed it, they did. It gave us great comfort that AJ was being well-cared for. Yes I said well-cared for.

The last day of preschool brought a picnic lunch and playtime at the neighborhood park. His first teacher was leaving that summer and I'll never forget the conversation we had at the picnic table. It was beyond encouraging to our little family

That summer we sold our house and moved into the district AJ was attending. We wanted to keep him enrolled there, but our home district wanted AJ to attend kindergarten in our home district. I don't think so. It was not rare for families to move into this district for this DHH program. It is beyond cool to see these kiddos grow up together and see sprinkles of cochlear implants in each grade level. I was terrified of how he'd do with the move, and as he usually does, he surprised us and handled it like a champ.

Kindergarten

It had become clear throughout AJ's preschool years that AJ was not developing speech. Because of his late access to sound everyone wanted to give him time to catch-up. It was clear something else was at play here. His speech therapist quickly became the master of improv and thinking out of the box when it came to AJ. She was gentle although factual in her delivery when sharing his progress with us. We had started using PECS, which he was very successful using. Over the summer she talked to me about an iPad. She really felt he was ready to take the next step. I was resistant. I felt like this was permanent and sad. Basically I had all the wrong feelings about it.

Because the iPad became AJ's voice.

We were able to obtain an iPad for AJ through funding he qualified for through our county. One morning his speech therapist, kindergarten teacher, and I all sat around a circular table with this iPad. iPads were rather new at that time and his speech therapist was far beyond the teacher and I understanding how it worked. We had also gotten a very expensive communication app for this iPad. We quickly realized it was the wrong choice for AJ and chose a different communication app called iCommunicate. A lot of communication apps use stick figure images and rather cartoon pictures for the images of objects. It became clear right away that AJ responds to real pictures. We took pictures of everything. It's hard for me to remember where we started, because the way AJ communicates with it now blows my mind.

Kindergarten was also the year congitive disability was added to his IEP. This was also the first year that it was difficult for him to spend time in the regular education classroom. He spent most of his time in his DHH teacher's room and then a small amount of time in the special education room. I had an extremely hard time with this. I don't know why. I suppose it is obvious. His kindergarten teacher was gracious to include him in as much as possible.

First Grade

First grade brought welcome changes, a new special education teacher, and programming for AJ. Second grade brought more change and the introduction to a communication method called RPM (Rapid Prompting Method). I remember sitting in the car in front of my mom's condo listening to his teacher tell me she used RPM for the first time and my boy knew his shapes and colors. I sobbed when I hung up.

It's all inside of him, he just can't get it out.

Second Grade

Second grade brought the creation of a resource room. This was an awesome space for sensory exploration. His therapists rocked the path to making that space possible. This was also the year we began using a different communication app for AJ called Go Talk Now. This app was much more user-friendly. In the past we had used more of a picture schedule where he could swipe and see what he was doing next, as well as choose pictures from a glossary of photos, but it really wasn't functional beyond that. This allowed him to make choices and opened the door for multiple layers of boards to be made and expand as his use expanded. It's beyond awesome. Second grade also began the expansion of our family as we began the process of adoption again.

Third Grade

Third grade was by far the worst year we've ever had. I really can't sugarcoat it. The school's direction changed to "full inclusion" and the results were devastating. It was not appropriate for AJ to be in the regular education classroom. Special education classrooms were made obsolete and AJ was isolated without any peers present. It was a cold, windowless room that was given the title "breakout room". With the exception of gym, art, and music, they moved every single environment he was used to to a different room or location in the school. He endured five staff changes that year. His behavior spiraled out of control, he refused to comply at school, and stopped wearing his cochlear implants.

We brought his sister home that December and I still feel a twinge guilty for not realizing what was going on sooner. We consulted AJ's neurologist about his behaviors. He shared that AJ has no executive function (doesn't understand right/wrong or what is safe/unsafe) and also has little to no impulse control. A light bulb went off in our heads. It made so much sense. We sought out a psychologist and were referred to a psychiatrist. We were determined to get to the bottom of what was happening. It is a bit disheartening when a psychiatrist stares at your child and says, "I don't know." By the time we figured all of this out it felt very too little, too late.

Third grade was the year that forever changed me as a special needs parent and advocate. It hardened me a bit. I'm leaving out a lot, but know we fought. Hard.

Fourth grade began with all of the puzzle pieces moved back into the right places. AJ once again had a special education classroom to call home. His lead teacher just understood him and continuously thought outside the box. His RPM use exploded and he was learning! This was the year he learned to jump independently and ride a bike! It was a year of building him back up from the disaster the year before. It was his staff working tirelessly to essentially re-train him to wear his implants at school and calm his behaviors. It was the year of getting him back in the saddle and riding once again.

Fifth grade has been like riding a bike. His team knows him, he knows his team. He knows his classroom, his peers, and his routine. He can tell time and has a reading comprehension of a first grader. This from the boy who was the subject of a conversation with a neurologist who said, "This is about as good as he's going to do in life." Whatever man. You don't know our AJ.

He had surgery this year and his staff has asked all the questions and done all things to support him like a rock star. They don't blink at my ridiculously long emails, updates, and constant information. They are kind and have a smile on their faces when I drop the kids off late because AJ didn't eat, or sleep well, or his body doesn't want to cooperate, or he had seizures. They compliment my outfit even though I forgot to brush my hair and threw on whatever because life with AJ is so different and unhinged. They offer me hugs when I pull up in tears, to which I say no to, because it will make me cry harder. But still they offer. They always tell us we "don't have to do that". We do. They always say, "Let us know if you need anything."

Teacher appreciation week was a few weeks ago and it stopped me in my tracks. Usually I'm one of those that goes above and beyond, because HAVE YOU READ EVERYTHING ABOVE? 

But this year I couldn't think of anything that would come close to our level of gratitude for these people. AJ is not a cookie-cutter student. We are those parents. The ones who are not quiet when fighting for what AJ needs. After all this time, they still like us.

No coffee card, cupcake, or gift is going to accurately convey our love for these people. 

We had AJ's last IEP for elementary school last week and I managed to cry all my tears before and after the meeting. We watched as his staff relayed our son's present levels to his new middle school staff and then turned their thoughts to how they've been with him for eight years, how special he is, and how they would go to the ends of the earth to help our boy.

How do you say thank you for that?

Eight years we've been at the same school. 

AJ has had:

17 teachers

11 aides

1 speech therapist

2 physical therapists

2 occupational therapists

1 gym teacher

2 music teachers

2 art teachers

2 consultants

2 very involved administrators

5 principals

The magnitude of that is staggering. Kids like AJ don't do well with transition, and his performance reflects that. It doesn't mean we don't push him, it doesn't mean we don't stretch him, it doesn't mean we keep things static. But in his world, routine is comfort. I have no idea how he will react to this transition to middle school. He rocked our move, so I know better than to short change him in this department. But a whole new team and a whole new building will be difficult for him. Not everyone understands our son. Thanks to his current team, we are as prepared as possible. 

Removing the "I"

Easy.  You know, it’s that word that everyone says in phrases. 

I wish ____ was easier.

I just wish it was easy.
Why can’t it be easy.
It was so easy for so-and-so. 

I think it is human nature for us not just desire, but take the easy route.  To want the easy route.  Humans-well, let’s face it.  We are sorta lazy.  Most of us do not need to hunt and kill our food.  We’ve got comfortable places to call home and lay our heads to sleep.  We’ve got the easy.  But yet, we always want it easier.

A friend and I were recently having a conversation when she shared that she would like things to be easier for me.  Bless.her.heart. If you would have asked me a few years ago, I would have jumped all over that.  Yep, I want it to be easier too. 

But that is not my answer today. 

The conversation was in regards to AJ being non-verbal.  I am not going to lie-it is difficult.  It was and has been tremendously difficult.

But it is my normal. 

Sidebar: What in blue blazes is normal anyways?!

In a broad definition, it is my easy.  Because it is what I know.  I don’t know any different.  I know my story, my family’s story, my son’s story.  Those are normal stories to me.  I am less judgmental of other’s easy. 

AJ has and is making tremendous strides with his communication.  As in, every day in the last week he’s made my jaw drop to the ground with something new and exciting.  I mean seriously kiddo.  Rockstar.  Did it sadden me AJ wasn’t talking?  Yes.  Deeply.  Does it sadden me AJ isn’t talking?  Yes.  Sometimes. 

But who am I to say that AJ speaking would make life 100% easier and better.  His life or my life? Life is pretty good with AJ making progress in his communication.  He has what I call a knuckle sandwich of language.  Lack of language exposure early in life, hearing loss, speech & language delay, apraxia.  Basically, it’s a big hoagie of obstacles.  But, AJ can totally overcome it.  In his way.  I think it is often difficult for those looking in to understand that AJ has many, many challenges before him.  When one area soars, another falters.  That’s just the name of the game.  And you plug along.

It took a really long time to remove the “I” from AJ.  Meaning, what I wanted for him. My plan.  My way.  My convenience.  My wants. We wanted to give him the very best life possible.  He didn’t argue. When we said, you’re going to do this, this, this and this because we want you to… He countered with, here’s how this going to go.  Jeremy wanted a child who played sports.  Lots of sports.  He wanted an ESPN buddy and Brew Crew cheering mate.  I thought I didn’t want much.  Just the mom experience with a healthy child so I could follow everyone else’s lead and do the normal mom things.  AJ challenged both of us.  Our dreams were not shattered, they were simply altered.

It was not, by any means easy to let go of our own selfish wants and desires.  But, its not about us.  It’s about AJ.  Looking back, spending summers in therapy appointments yielded no outside therapy for my almost 7 year old.  Spending hours and hours putting his implants back on and encouraging him to listen and enjoy the world around him yielded a very inquisitive little boy who plays with his ability to hear and takes his coils off when he wants to ignore me, just like any other implanted kiddo.  Caving in and moving forward with PECS has lead to AJ navigating the iPad on his own, making choices, increased vocalizations, and clear communication.  Waiting for him to naturally fall into loving sports is happening before our very eyes.

“I” really can’t ask for much more.  Right this second, I’m ok with AJ not talking.  Because he speaks in so many other ways.  And functional ways.  Would I love (beyond the moon love) to hear his sweet voice?  Absolutely.  But for now, he tells me things in his way.  Just because he isn’t talking now doesn’t mean I think he never will.  It doesn’t mean we stop working on speech. It doesn’t mean we stop working on anything. But, I hear his vocalizations changing.  He’s getting closer.  And we’ll keep adjusting to the new normal as needed. 

We’ll just keep the “I” at bay.

Intentional Success

AJ's IEP was this past week.  It was the BEST.IEP.EVER. It was also the fastest, coming in at 2 hours exactly.  I've mentioned before that this year has been incredible for AJ as far as school is concerned.  He has made so many gains.... I'm bursting with pride just thinking about it.

Here are the highlights:

AJ has taken to his iPad with a force to be reckoned with.  He is able to turn it on, swipe the screen, choose his iCommunicate communication app, or his sensory app board.  He knows the home button will return him to the home screen.  He exercises this skill a little too much.   He chooses from his "Basic Needs" board with great success.  He knows his picture schedules very, very well.  This has been key this year.  For example, his Monday board has one picture at a time, where he swipes to see what's next.  What is amazing is that we have decreased the number of pictures quite a bit.  At the beginning of the year his school day boards all started the same: picture of his school, followed by his assistant, the hallway, the elevator, another hallway, the entry to a specific room, and the room itself.  Now, his school day boards start this way: picture of his school, his assistant, the room that is his destination.  A goal for app use was established as well, since AJ likes to flip through apps like he's a fish.  At his IEP it was discussed that while it drives us all batty sometimes, we think its AJ enjoying the "power" of being able to control the iPad and flip to whatever he wants.  He's such a smart kid.

The most awesome iPad related gain?  AJ is spontaneously seeking out his iPad to try and tell us what he wants.  HUGE!!!  He's understanding that in some situations he's not getting his point across.  So instead of throwing a tantrum and getting uber frustrated, he's using his communicate tool-independently.  The first time he did it at home Jer and I about jumped out of our seats!

AJ is matching pictures to pictures in a board book.  We are beginning to expand this. He is able to trace the letters of his name.  He can trace a vertical and a horizontal line.  He can cut a piece of paper independently using a tabletop scissors.  He loves to cut things out.  This is quite a change from earlier in the year and even last year.  Our goal is to have him engage his left hand/arm to move the paper himself instead of an adult guiding the paper.  AJ is coloring (wahoo!) with great success.  He doesn't do well with just a blank sheet of paper, but does well with a target, such as a coloring sheet or a shape drawn on the paper.  This is HUGE, as he has never been one for coloring.

AJ is doing puzzles with success!  His special education teacher came up with the great idea to color the puzzles piece inserts black to give AJ a color different between the wood puzzle board and the inserts.  It's worked really, really well.

Each year his school PT times him walking the same distance in one particular area of his school.  This year, he dropped his time by 24 seconds.  He's getting faster!  He's also participating like a champ in SDPE (Specially Designed Physical Education).  He's open to anything they throw at him (pun intended).  For example, at the beginning of the year, he was reluctant to try new things.  Now, he'll explore it and pays much more attention to the environment and kids around him.  He is actively participating.  Seriously.  I'm bursty.

A few weeks ago a taekwando school came into the gym classes and worked with the kids.  Apparently, AJ was all.about.it.  He "got it" from the get-go.  They were holding their hands a couple feet off the ground and he was kicking all on his own.  You better believe we're checking into this for him!!!  His school OT is really working on his pre-writing skills and his fine-motor skills.  He has come so far and is open and willing to pretty much anything she presents to him.  She's also really good at finding things that she knows AJ will like.

AJ has become more and more vocal.  His vocal play and imitation has sky-rocketed and we are honoring every sound and encouraging him as much as we can to keep it up!  He's also doing this at school, which is super exciting to see him doing it in both environments. He's keeping both his implants on during auditory therapy, which is HUMUNGO!  Yes I made that word up.  He still prefers the right, but we are making some great progress with returning to bilateral.  I would say 5% of the time he'll "fight" and not want the left on.  That's only 5%.  He's been putting on his own coils for quite a while now (wahoo!), but now he's trying with the left exclusively.  It is amazing to see him "playing around" with his implants.  He takes the coils off and on, realizing the difference between when they are on and off.  He's no longer ripping his implants off or chewing them.  Hallelujah.  Seriously.

We have a follow-up this week at his CI Clinic-as he's been implanted for 4 yrs on the right.  I don't know how that happened.  I'm looking forward to him showing his audis his amazing progress.  And for the first time ever, I am not stressed about booth testing.

AJ needs a brother or sister.  Oh, wait.  That wasn't in the IEP ;)  But its what I was thinking during the peer portion of our meeting.  AJ learns best when he instruction is 1:1 and he has 2:1 assistance.  Meaning, the teacher, and his assistant helping/modeling/prompting him.  However, there has been a huge shift in his interaction with his peers.  As in, its exploded!  He loves to be around his peers. He's seeking them out.  He's getting better at acknowledging them with a high-five.  This is the blanket action we all do to greet him.  He's really good at doing it with adults, but he needs a bit of prompting to do it with his little friends.

AJ's regular education teacher sat in on AJ's entire IEP.  I wanted to squeeze her.  AJ is rarely in his classroom, so I was unsure what she would have to say.  But she opened my eyes to the magic of my little boy.  AJ has a desk in her room-he has all year.  I took a picture of it at the beginning of the year in awe that my boy was a first grader.  With a desk.  Sigh.  Anyhow, she shared that even though AJ isn't in the classroom, the kids have NOT forgotten about him.  She hears conversations between the kids, "Did you see AJ today?!", "I saw AJ on the way to lunch"!  I just about fainted from the cuteness and kindness of these children.  They look forward to seeing him and guard his desk, saying, "That's AJ's desk".  I just.  We could not have asked for a better school environment.  He went to hug one of the preschool girls the other day.  I just about died from the sweetness.  They are his little army love.  I love it.

AJ's been involved in a peer social group for the last few months with some of his male buddies.  They all just radiate cuteness.  This has really helped him make eye contact with his peers, engage, and learn social skills.  It has transferred into other areas, such as engaging his peers throughout his school day.  Currently, AJ eats lunch in the special education room with a few of his friends.  The goal for next year will be to start him in that environment again (for consistency) and then transition him back into the lunchroom with all of his peers.  Apparently, his friends have asked to have him back at lunch with them.  We miss him!  Tear.  At his CI follow-up well be figuring out if we can map a specific program for the lunchroom environment so that he can be with all his peers.  It is now appropriate for AJ to be with his friends on a more consistent basis.

He's bored here at home.  Often.  I am not as fun as a squealing 7 year old girl, apparently.  Or his other buddies.  I am hoping to set up a playgroup with his buddies over the summer.

Speaking of summer-another shocking revelation at his IEP.  AJ only qualified for auditory services with ESY this year.  Holy buckets.  I had to have the staff clarify about three times to really grasp this concept.  Our school district offers regular summer school-what I call fun summer school-which AJ will be participating in.  They have a special needs component which will allow us to sign him up for some fun sessions.  His auditory will be built into that time. I am so excited I can hardly stand it.  No more summer ESY with him and a teacher in a room.  He'll be with other kiddos.  None of this was appropriate last summer, nor in years past.  He wasn't ready.  But boy oh boy is he ready now.  To know that the only area they see regression possible in is auditory, that means my little boy is being successful.

Another goal for AJ is to attend to books for a certain period of time.  Often, AJ flips through books like he flips through apps on his iPad.  It's not that he doesn't like books, because he does, but its a crapshoot as to whether or not he'll attend or not.  Some days he's really "on", some days he's "not".

A few months ago I attended a seminar called "Lights, Camera, Autism".  It was awesome.  And not just for autism. I learned a lot about how to use technology to help AJ.  I was proud to realize we were already ahead of the game!  One piece that I really took away was that the structured "frame" of an iPad (or other screened device) really helps frame and concentrate his brain.  His school SLP asked me for videos of each of us waving and saying "Hi to AJ".  From that format, AJ has learned to sign "Mommy", "Daddy", and "dog".  Yeah. Pretty incredible.  Just this week he produced the modified sign we created for him for "all done" (tapping his hands on the table or his lap).  Yesterday he mastered "bath".  Next up- "sleep" and "cat".  He loves the videos of our dog and cat that I took.  The dog barks, the cat meows up a storm.  He squeals with delight when he sees those videos at school during speech time.  I've noticed him reacting differently to the dog and cat here at home as well.  He's more aware, seeks them out, and pets them.  Framing his world has been very, very successful.

If you are interested in learning about using technology to help your kiddo, check out the Lights, Camera Autism book.

The one area that is still grey and often frustrating is AJ's behavior.  We've figured out that he's displaying these behaviors for attention.  And, because he has no other way to express his emotion. When he's super excited his he'll scratch and pull hair. When he's mad he'll scratch, bite, pinch.  Sigh.  One thing that has helped decrease the behavior is putting words to his actions.  "Oh your mad, I know you are mad!  You.are.mad!".  I'd say that this is helping about 75% of the time.  We'll keep at it.  I'm also brainstorming with his school SLP and OT as to how we can teach him emotions.  I would be ecstatic if we could teach him happy and mad for starters.  AJ doesn't understand those cute/creepy posters with the faces of emotions.  I hope we figure something out soon.

AJ can open and walk out both our front screen door and the back screen door.  He's so independent now. One of his IEP goals is to independently wash his hands.  He's 75% there.  Little skills like this all lead to his successful independence as he gets older.  You wouldn't think it matters, but oh it does.  He can get fully undressed on his own now.  He gets in and out of the car without assistance.  He walks down the stairs without assistance, holding the railing, independently-and is much, much faster.  He understands verbal prompts only, such as: stand up, sit down, pick it up, where's your coat, let's go, stop, get down, I could go on.  Isn't that awesome that I could go on!

The biggest idea we discussed was how AJ is displaying a copious amount of intent.  With everything he does, there is intent behind it.  No longer is he just wandering through his days.  The little boy who wasn't supposed to walk or communicate successfully-IS.  He has expectations, wants, needs, intention, and happiness in his life.  I don't think I could ask for much more than that.

GO AJ!

In Which I Am a Super-User

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

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

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

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

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

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

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

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

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

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

PECS Book

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

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

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

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

Computer/Word Document

Laminator/Paper Cutter/Hole Punch

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

 I chose the "rough".

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

Cut your folders in half first.

Then cut to desired size.

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

 I made marks with a pen.

(Make sure your binder surface is clean!)

Mount your velcro on the front.

And on each page.

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

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

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

I ran the pictures through my laminator

*NOT PICTURED*

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

a square on the back of each picture.

Here, I've put them into categories.  

When we first started, they were all mixed together.

And finally, here are some photos of my little man

COMMUNICATING!

What Happens When...

About a year ago I went to a cochlear implant information meeting.  The meeting is held twice a year by our cochlear implant team.  My main purpose for attending the meeting was to hear a pyschologist speak about children and their futures with cochlear implants. 

The meeting itself was rather interesting.  A slide presentation was given, explaining the basics of cochlear implants to the adult crowd.  The entire CI staff was on site to answer questions, and I even found myself wanting to stand up and shout "DO IT!" to those that were skeptical.  Being on the other side of the fence has its advantages. At the end of the meeting, there was a panel.  The panel was made up of adult CI users, some bilateral (2 CI's), bimodal (1 CI, 1 Hearing Aid), some unilateral (1 side) CI users, and parents of children with cochlear implants.  One of the children was with her mother at the meeting.

The "talk" given by the psychologist was only to a few parents, but I felt much more comfortable with it being a small group setting.  I learned a lot that night.  We all knew this pyschologist, as he had given our kids their psych evals that were required for cochlear implant candidacy. That night, I learned a lot about swiss cheese and how my chiild should really have at least one sibling (sometime I'll dedicate a separate post to this pyschologists "talk"). 

On the ride home, I wondered why we were never asked to be on the panel. Hmph.

Now,  after all this time, I get it.

What happens when your child isn't the poster child for cochlear implants?  What happens when they don't speak?  What happens when they don't do conditioned play (holding an object next to their ear and dropping it when they hear a sound)?  What happens when they don't communicate?  What happens when they *gasp* use signs only or *double gasp* are only able to sign a few words? What happens when you don't fit the cochlear implant success mold?

You aren't asked to speak on a panel.  You question EVERYTHING you have done with your child since his cochlear implant activation.  You cry.  A lot.  You sit in a cloud of confusion.  You endure countless tests and unexpected read the words moderate mental retardation on a lab sheet that you are certain your child's doctor never meant for you to see.  When those tests come back negative you do not feel relieved.  You feel numb.  Still numb.  Perhaps even more numb.  You did not carry your child in your womb. You were not at your child's birth.  You do not know what happened before or after.  You guess, question, and frustrate yourself to no answers because knowledge is power, isn't it?

You consider other communication modes.  And learn that something is better than nothing in the word of communication.  You begin to hear that there is a difference between vocalizations and verbal communication.  Despite knowing better, you want to fix it. Fix what?  Fix everything.  And you cry. A lot.

You internalize anger toward people you know with normal children and people you don't know with normal children.  You cry with sadness and a bit of jealousy when you read another blog with a post about another CI child's success.  You find yourself in yet another unique circumstance. You cry when a child your own child's age is running around in the park chatting up the place and your child says nothing, all while screaming bloody murder at you because you are trying your hardest to stand firm and teach him to enjoy the whole park, not just the swings.  You pray at night to hear the word "Mama" just once in your lifetime.  You hide tears when another child calls out to their parent. You pray that tomorrow he will wave bye-bye on cue, because you know he can. 

You grieve.  All over again.  You don't grieve the hearing loss.  You grieve the fact that the possiblity did not produce the ability. You grieve your child's ability to communicate.  You grieve not hearing his sweet voice.  You wonder if you will ever hear his sweet voice.  You cry.  A lot.  You do your best to own your feelings because no amount of kind words or ignorant bliss will make this all disappear. You give yourself permission to have bad days, because there are many. You grieve the hopes and dreams you had for him with this exciting thing called the cochlear implant.  You take it too fast, and then too slow, trying desperately to gasp for air as you run back and fort between strategies.  You move forward, not knowing where the hell you are going.  You do what you have to do, because apparently...this does happen.

Playing the Game

"Playing the Game" is one of those phrases that slips out of your mouth at the end of a conversation.  It is similar to saying "We Keep on Trucking Along" or "We Just Go with the Flow".  

I had a conversation with one of AJ's therapists yesterday, which ended with me saying "We just play the game", and his therapist saying, "Exactly".

For the past few weeks, our lives have been centered around one question, "What's wrong with AJ"?  Let's not beat around the bush, people.  He's not talking.  He's not imitating.  He's not doing A,B,C,D, heck we could go into double letters AA, or even triple letters AAA.  So something else HAS TO BE WRONG. 

Back in December, I had posted about AJ's appointment with his development specialist.  The one where I was told something HAS to be going on, like a chromosomal abnormality, a genetic disorder or syndrome.  Where he told me AJ might of had a stroke at birth. 

After a long waiting period with insurance, by miracle the genetic testing was approved.  And I sat on it.  Seriously, who wants to take their kid in to 1) have blood drawn, because that activity is always full of fun 2) have tests drawn to see what "else" is wrong. It was a typical case if I wanna know, but I don't wanna know.

We should have the results soon.  In the meantime, I contacted AJ's neurologist and asked him to take a lot at his MRI done in 2007 explain EXACTLY which part of AJ's brain was damaged (his cerebral palsy) and whether or not there was an evidence of a stroke.  I made sure to pull out my old calendar and make mention of when the MRI was done and when we originally saw the neurologist. 

Ufta.  Looking at that calendar was hard.  Really, Heidi?  Its.a.calendar.  Yeah, it is JUST a calendar.  But its full of the chaos that was just beginning.  There were things scribbled everywhere, as it was a small calendar, and under the original neuro appt I had written Dad with a halo underneath (my Dad passed a half hour after we left the "Your son has CP" appointment).  A flood of emotion ran through me, included how much I hated the neurologist that day. 

Now? I love him.  Ok, maybe love isn't quite the right term to use for someone on your son's medical team, but I digress.  He's an amazing doctor, very laid back, and has a way of calming me.  He returned my recent call re: location of damage in the brain/stroke  himself.  He explained everything in layman's terms (at my request), which boiled down to this:  AJ's brain damage is in the areas that control the voluntary movements of the limbs and the trunk due to lack of oxygen and/or blood...during/or at birth...no evidence of stroke.

Ok then.  While I felt like I should have shouted from the rooftops and been uber relieved, I was kind if stunned.  I was expecting him to say stroke.  Because, come on, there HAS to be something else going on, right?

I really, in my heart of hearts, don't think so.  It seems that AJ's...ahem...(whats the correct word for this)...unique history, his late diagnoses of BOTH cerebral palsy and deafness cannot possibly be all thats challenging him from moving forward.  Nope, gotta be something else.  So lets run every test in the book, and try to cram, cram, cram this kid in a box.  A mold.  Something that textbooks, clinical experience, whatever, have told us existed and this is how you proceed.

Well, I would doubt that there is any child that has had the exact some experience as AJ.  Which truly makes does make him unique, doesn't it.  His history and journey has been unique and makes him special, as he has most certainly defied the odds against himself. 

AJ's skills are often underestimated.  Or it is assumed that he just can't do it.  Because he's stubborn.  Oh is this kid stubborn.  If he is not motivated, or if he's bored, or not challenged, forget it-its over.  In the constant pursuit of putting him in a box or mold, he's expected to do X, Y, Z.  "AJ put the blocks in the bucket."  What child, literally, sits on the floor and puts plain blocks in a bucket just for fun?  Maybe some, who might dump it out and make a game out of it.  But I am finding that AJ responds much better in play-type situations.

It is assumed, that if he doesn't do it right that very moment, he can't do it all.  Mark "no" or "emerging" on that checklist.   AJ isn't a puppet.  He is not a dog.  While I understand that AJ, just as all kids, need to learn to follow directions and in his case verbal prompts do something, I feel we are constantly telling him to sit, stay, fetch, drop in the bucket on command.  Ask him to perform like a circus animal or something.  While I understand the checklists, evaluations, and testing is necessary, it sometimes paints a very gloomy picture.   It is incredibly hard not to focus on the results, numbers, and levels.

I've been thinking a lot about the two families I know who have children with CP/CIs.  We are certainly drastically different.  But talking to these families renews my hope in AJ's future.  Because those kiddos defied their own odds.  The similarity?  All of our kids have CP and deafness with CIs. Yes, we are different, I know that.  Its been drilled into my head.  But that doesn't mean I shouldn't talk to them! Those children were diagnosed earlier, had early intervention much earlier, their journeys overall were very different than AJ's.  While we were able to work on AJ's motor skills from the moment he came home, his cognition, his vision, and most certainly his hearing and the ability to communicate came much later.  There was no therapist at our house when AJ was just month old.  He didn't truly tune into his world until he was given the gift of sound.  When he was given surround sound, he tuned into his world like we've never seen before.

His history is not to be overlooked.  While we don't want to dwell on it, his history is important.  It IS part of who he is.  And if you weren't there with us, I understand, it is hard (and sometimes a lot of people don't comprehend it at all) for you to understand it.   It is quite easy to get caught up in the sadness of his story and not view it from a logistical side. There needs to be a delicate balance between recognizing and understand AJ's history and moving forward without hesitation because of his history.  It took years for us to convince someone, anyone, that he needed speech therapy.  Why? Well, "With kids like AJ"....  Can I tell you how much I despise that sentence?  Move forward.  Don't assume he CANNOT, because odds are HE CAN.

Do I know AJ sometimes looks like he's in LA-LA land?  Of course.  Do I know he doesn't wave bye-bye?  Yes.  But I also know that he CAN wave bye-bye and at least now if you say bye-bye he turns around and looks you right in the eye.  He knows what it means when you say "Lets Go Bye-Bye."  Do I know he doesn't vocal play?  Yes.  But he's starting to. :)  Do I know he doesn't know his colors or shapes, or numbers?  Of course.  I also know its because we aren't there yet.  A big part of learning is communication.  And if he's behind on that, we'll then folks, he's probably not going to sing the ABC song to you today, now is he? 

But that doesn't mean he won't.  In the past few weeks I've found myself in a place where I've been beaten down so many times I started to fool myself into thinking these things are never going to happen, so why bother. So many people saying so many different things. So many things to work on, worry and stress about. The odds are against him, I know that.  They always have been.  Do I want to hear, in someone's professional opinion, that he won't talk.  Of course not.  Imagine, for a  moment, how you would feel if someone told you your child was not going to talk.  First, intense emotion.  Second, fight or flight.

We'll continue Playing the Game.  Playing the "lets see whats wrong with AJ" game.  Do I think AJ will talk.  Yeah, I do.  Tomorrow?  No.  But I truly think he has the capability to do so.  Well what does so and so say?  This one says maybe.  This one says only a few words intelligible to family who know him. This one says try an augmentative communication system, its easier.  This one says I think so, he just needs to figure it out and it will be a challenge.  

As his advocates, Jer and I say yes, he will talk.  And thats what matters.

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!

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.

Relief

Well...we are officially a no-nap household. I'm not sure I expected it to happen this fast. Then again, AJ is almost 3 1/2. While it has made our days seem very, very long, it is a relief to put AJ to be at 7pm and know that he is going to sleep. No more busy-body activity in our bedroom before we go to sleep. We've had a few days here and there where he's fallen asleep in the early afternoon. On those days, we watch the length of time he naps very closely.

AJ going to bed early has given us a chance to unwind and can you believe this: talk. HA! Talking one-on-one without a 3 year old trying to spoon an entire bowl of pudding into his mouth is much more productive. It also helps that I'm not trying to stay awake late at night with toothpicks holding up my eyelids.

Here's a run down on the latest:

PT: After a big mix-up, we finally have 2 AFOs, not 1! They came in the mail (weird) and insert panic when I put them on...and they did not fit into his shoes. One phone call to his PT later, panic mode ceased. Bottom line, I need to put him in bigger shoes. They should actually help his balance even more (I was imagining him walking around in clown shoes). We'll try them for a few weeks and if it really isn't working, I'll have to take him back to his orthotist to have them trimmed. We don't want to trim too much, as they are molded a bit longer to allow for growth. We don't need to be getting him new AFOs every 6 months due to growth. This is the age where he "should" have a growth spurt, so we'll see. He also received his de-rotation straps. Ugh. They are going to be quite the challenge and I don't like them-AT ALL. That's all I'm going to say for now.

His PT hasn't seen him in a few weeks, (even though we've had PT with other staff at the clinic) so I was very pleased when she was so impressed with him last week. His left leg has been MEGA tight the last few weeks, and he was nice and loose for her. She complimented me on working it out. That felt good. I did mention his left foot is really tight, and she agreed. We are to continue our foot exercises and she added a new one that makes him giggle. Thank God he's ok with exercises, it would really suck if he wasn't. We need to watch his foot so that he does not become a toe walker. While we were just watching AJ walk around the other day, another Mom told me that all she sees is AJ-perhaps a bit unbalanced-but just AJ-and I see the foot turning in, the this, the that. It is true. While I'm not obsessive about it, I keep on top of it. AJ's team has trained us well. I knew God gave me the memory of an elephant for something....

OT: AJ received his left hand split two weeks ago. He tolerates it just fine. He'a already swirled it around the toilet water, so its nice and broken in. And washable, by the way. The splint is soft and keeps his thumb out. It also has a metal stint that keeps his left wrist from curving down. He's really at a point where we hemmed and hawed with his OT has to whether he'd need it by the time he got it, but it is helping. His wrist plays games with us. Some days it acts up, others it doesn't.

AJ continues to make gains in fine motor skills. He's been introduced to a swinging bolster at his therapy clinic. He's holding on to the rope and providing himself stability very well. He also painted with pudding with both his hands and feet last week.

GI: Jeremy and I want to rule out a tapeworm. Somehow, and don't ask me how, AJ was never tested for parasites by the GI Clinic. We know he was tested by our pediatrician when he came home (results: negative), but why the #($%*% didn't the GI Clinic test him? Anyhow, Jer's had his feelers out at work (sometimes it pays to work with lots and lots of doctors) which has revealed that not only should he have been tested, the test should have been repeated 3 times. Fantastic.

Needless to say, we have the collection kit and will get it to the lab this week. This kid is eating like a horse. Now, he may just be a super-burn-lots-of-calories-CP-kid. But we won't stop until we get a freakin' answer. My favorite part of this is when I called to inquire about testing for a tapeworm and was informed we didn't test for parasites period, I asked why, and received the response. "He doesn't have the symptoms." Well, my kid didn't seem to "display" symptoms of a child with CP or DEAF when he came home, now did he?! Don't give me the symptoms crap.

On the bright side, we went in for another terrifying weigh-in last week, AJ gained a full pound. This is great news! His height is the same 2'9". I haven't heard from his GI doctor yet as to when he wants to see him again. For now, we're safe.

Eyes: AJ had a follow-up appointment last week, with full dilation. He had a fantastic day. He was comfortable in the doctors office, in the room he walked around and explored. I've never seen him do that. He sat on my lap, responded to her "clicking" sounds she made with her mouth to direct his attention to her light. That activity just astounds me. I don't know why.

He did great in the waiting room while we were waiting for his eyes to dilate. He noticed the other kids. I observed sisters with their two kids while waiting, they were nice, but were starring at AJ like no tomorrow. Just ask me, I don't care. Ask me, I'll tell you. They left and another mom came in, with a son who had Down Syndrome...and had hearing aids. He was adorable. She was filling a large syringe with water and was administering it (g-tube) while he was on the rocking horse. We smiled at each other, encouraged our boys to say hello, and I just felt, at home. She didn't even see AJ's CI. But there was a comfort there that I wish I felt with those other parents. Hm.

AJ has never wanted to go into the toy corner. He always stays by the patio doors (condo building made into offices). I guided him toward the toys and he found the puzzles right away. We sat on the floor and played with the puzzles and then with the rocking horse...on which he discovered he could rock himself back and forth. When he was done, it was our turn, and he again was a champ for his eye doctor.

He needs glasses. Its only a small perscription due to his astigmatism, but its mostly to help him focus. Hopefully this week I'll get over to Jer's work to order those. AJ's been picking up the most tiny things off the floor. How that's not focusing, I don't know.

CI: We had AJ's 6-month post activation audiogram last week. He tested at 25db. Which totally floored me. My deaf son, who heard at 110db+, can now hear ABOVE the speech banana. Amazing. AJ sat like a big boy in my lap (which he's never done) and tested really well. We've had AJ wearing the BTE (behind-the-ear) set-up for about two weeks, thanks to Peas' Mom encouraging me to take that leap. We love it and AJ's audiologist was also very excited with this change. He's making continued progress and even had 6-8 more gains on this checklist we complete at each visit. The next step is to get AJ vocalizing more. More and differently. Let's see some consonant and vowel sounds, lets do some ma-ma-ma, let's use our voice when we want something, let's respond physically to music. Those sorts of things.

AJ's eye contact/eye gaze continues to improve as well. This is a major gain. While at his appointment, we also had the pleasure of meeting the new audiologist that joined our CI program. She was very pleased with AJ's gains in just 6 months. She also told us that Lowell's program is one of the best in the country. For Tammy and Tina, she compared it to River School. YAY!!!

On a very sad note, we found out AJ's ENT/CI Surgeon is leaving. I can't even tell you how this upsets me. He will be missed, but we are in good hands from here on out. Portland, Oregon: You better appreciate this great man!

Feeding: AJ's struggling with his head position during eating. Per suggestion of his SLP at CHW, we are doing a swallow study to "rule things out." We all think his action is a compensatory strategy AJ's uses to help gravity aid his food going down. But, we want to be sure. Basically, he gets to eat in the x-ray room in a special box-like chair. We need to put barium (unflavored) on his food and they will take pictures while he eats. The swallow study may help us gain more PA (prior-authorizations) from insurance to allow more feeding therapy. Even if we only check in once a month, I think it will make the whole team (us, CHW, and his school) feel more comfortable. He has made great strides with chewing his food though!

CP: After his eye exam, I took AJ to have his baseline x-rays done. The CP doctor (filling in for his regular doctor) we saw in July ordered them. Kids with CP are are risk for scoliosis, as well as many other things. Now that AJ is 3, they wanted to take baseline x-rays of his back and pelvis to have a starting point to refer back to as his grows. I was very leary as to how he would do. He did FANTASTIC. Seriously, fantastic. Another example of how he's really tuning into his world. He did have his CI off, which amazed me even more. I have no worries about the swallow study being done. He did so well with the baseline, and for the next one he gets to eat? Easy. We have not received the results of the baseline x-rays yet.

School: The representative from our home school district did come and observe AJ and the program as a whole last Thursday. I guess it went well, as she stayed over an hour and I received a message later in the day saying what a great program Lowell has and that we'll meet again in November. A bit of relief there.

AJ continues to do incredibly well in school. He did have one rough day last week where he came out screaming bloody murder (and none of us know what that was about). Overall, he is just amazing us. It is THE COOLEST thing on the planet to have him come home and JUST DO A SKILL. Like, hey, no problem. And he does it with this look, like "Whats next Mom/Dad." Too funny. AJ's teacher and I do a lot of emailing back and forth. We are so grateful that she takes the time to care about all of AJ's needs.

House: Jeremy and I have never been good at asking for help. When AJ came...and then his issues were surfaced...we got even worse. To be honest, I think a lot of that came from people's reactions to AJ's special needs and the "let me know if you need anything" generic comment that never turns into anything because their own lives continue, they forget, or don't have time. While we certainly didn't expect, we were let down. I think too that we ended up building a wall, since we got so used to not being able to depend on others. I may sound judgemental, and for right now, I'm ok with that. There was a time I had no sympathy for the normal/typical/average Mom who complained about everything that had to do with their normal child. I had no sympathy for someone who wasn't running their child around town to doctors appointments and therapists. I've gotten much better, although there is always room for improvement. Bottomline: We learned to deal. Just the facts jack.

Very kind friends of ours have offered their help with helping us get the house ready. I cried when I read their email. It was the answer to a prayer I had been repeating for a long time. Relief. I've started on all those to-do lists, and hopefully, we'll start to see some progress. To our friends, you know who you are...thank you.

So, tonight, I'm feeling a bit of relief. It's a nice change of pace.

P4 and more

Yesterday, AJ decided to be "2" when he woke up from his nap. He screamed for about an hour. Nothing, I mean nothing would make him happy. He heard his own crying and yelling...and didn't like it. AT ALL. Towards the end of his tantrum he took his coil off for the first time ever. He realized that 1) HE WAS THE ONE MAKING THE NOISE 2) THIS THING IS WHAT MAKES ME HEAR. We placed it back on and watched for reaction. Again, he got mad as his crying got louder. We think he was crying more because he didn't like the sound of himself crying. We gave him a break from his CI for a few minutes. When we placed the coil back on Daddy took him outside to walk around on his shoulders (his favorite thing to do). The boys went for ice cream shortly after their walk. Mommy had the whole house to herself for a whole half-hour. I typed AJ's IEP Parent Report-fun fun. We didn't switch programs yesterday and nothing outside the usual happened. So what brought this on? Hm.

Today, AJ had another speech appointment. He did remarkably well, this time turning to the "light boxes" in his SLP's room. We also use these in the sound booth as rewards for turning to a sound/noise. AJ needs to practice/learn how to turn. He was good at it in the booth before with his HA's, but that was over 7 months ago. He turned to the cymbals, clacker, drum, SLP's voice, clapping, and possible response to the tamborine. We were actually able to get him to turn to the light boxes. (He did not do this in the chair during activation-I think half of his issue was the height of the boxes vs. his chair) Jeremy and I had decided that I would turn AJ up to P4 while we were at speech today. He had no negative responses. Yay!

He had great eye contact with his SLP today, full of intent. He also grabbed her hands multiple times to push her hands together for "more". His SLP and I discussed what we've been seeing at home, including longer vocalizations and AJ talking back and forth with us (ooooooo, OOOOOOOOOO, ooooooooooo, OOOOOOO). When I turned around in the car yesterday to give him more of his snack, I said "more" (his coil was off-darn carseat) and he signed "More". SO.....we are thinking he definitely recognizes my facial expressions and what they mean, and he may also be reading my lips. We've been doing "physical nudging" to encourage him to consistently sign "more". We nudge his elbow and he brings his hands together. AJ is turning to our voices more often. He is standing up on his own again and walking instead of crawling.

When he got up from his nap today, he started screaming when I put his CI on again. What the? We tried to sooth and keep background noises to a minimum. When that did not seem to help, we again took it off, gave him a break, and put it back on. He was fine. So maybe he just needs a bit of time to adjust/wake up before we put it back on. He does not do this in the morning.

Tonight I played the piano for my son, which was an experience I will never forget. He enjoyed it and loved being up on the bench with me to pound the keys! He also did very well with signing "more" during his multiple courses of dinner tonight. He is doing so well...even though the crying post-nap freaked us out.

We're anxious for his audiogram on Friday to see where AJ's hearing with his CI. This may be the first sound booth experience where I won't have to wear earplugs :)

AJ's First Sign 1/18/09

Ladies & Gents,

Our son signed his first word tonight.

"MORE"

Age: 31 months
Exposed to Language (sign) @ 18 months old - Total exposure to date: 1 year
Developmental Age: 15 months(ish)

Signed,
AJ's Very Proud Mommy & Daddy