It's Not Fair.

I've been such a slacker CI Mom.  I've been keeping up with other CI Mom Blogs, but when it comes to updating Erin's blog I've really dropped the ball!  I want to write more.  I will write more.  It seems the beginning of the school year always inspires me...

So, this summer Erin attended a Summer Camp program and had a blast.  As a working mom, I worry that she will miss out on having a "typical" summer of running, playing, socializing... or:  Being A Kid.  But, I have to say, I never had a summer like she has this year!   Two field trips a week, art classes, Taekwondo, library time... Not to mention pony lessons on the weekends and endless hours of running back and forth between houses with her friends.  Phew!  It's been great!

A couple days ago, I picked her up, excited to hear about her field trip to a local Go Cart/Batting Cage/Bumper Boat facility.  I thought it would be one of her favorite trips.  Instead I heard the dreaded... Mom, it's not fair.  :(   When I asked her to elaborate, she hid her face in her hands and refused.  Those who know Erin personally know that enthusiasm is one of her biggest traits.  To see her drawn into herself had me concerned.  What was it?  She wasn't tall enough for the go karts?  Someone beat her at putt-putt?  So-and-so got to wear flip flops and she didn't?  (oh, the horror)

I pushed and finally discovered that her camp counselors had (quite correctly) chosen not to allow her on the bumper boats because they had water guns attached.  Really, more like water bazookas on steroids.  It was fairly likely she'd get hit. 

We hadn't prepared for the scenario - I hadn't discussed it with the teachers, hadn't made alternative plans, sent a bathing cap, etc.  And since Erin has become completely averse to going without her processors in any situation other than bed and bath, she was stuck standing with a teacher, watching her friends have a blast on the boats. 

My sweet girl burst into sobs once she told me.  Doubled over, wracked with grief.  It's not fair I have to have processors! she wailed.  What is there to say?  I bit my lower lip (keep it together, mom), reached back and rubbed her knee.  Another mile or two down the road, she was done.  Moved on.  Can I play with Shelly when we get home? Puh-leeeassse!  My sweet girl.  Tougher than I ever was.

It wasn't the first time she was on the sidelines because of her equipment and its restrictions.  I'm confident in saying it won't be the last.  We won't plan for every scenario in every situation - no matter how hard we try.  Unexpected problems will arise. 

Mom, it's not fair.

No, Love... it isn't fair.   But I couldn't be prouder of how you face it.

Kindergarten!

Awhile back,  (quite awhile, if you base it on how often I've been updating the blog lately...) I talked about our dilemma regarding whether Erin would be ready to start Kindergarten on time.  With her summer birthday, she only barely makes the cut off for our district.


Fast forward to now...  After exhaustive discussions and evaluations throughout the spring with her pre-school teachers, her TOD, the District Intervention Specialists, etc., we determined she is ready for Kindergarten.  Not only is our girl mainstreamed - she is ahead enough of the game to start Kindergarten with children who may be as much as 11 months older than her.   


To say we are proud would be an understatement.  Saying we are grateful would be descriptive.  But to say we're suprised?  Notsomuch.  


Once the decision was made, we had other factors to consider.  The daycare/preschool she has attended throughout her infancy and preschool years has a fantastic full day Kindergarten option with a very low teacher/student ratio.  The district has sent services to this school for the past two years.  But we knew we'd head into a fight to continue these services out-of-district into her elementary school years.  We needed to be prepared to give up services if she were to stay in place.  


After a lot of soul searching and a tour of the district building that left us pleasantly surprised, we ultimately decided not to head into that fight.  I had many legal arguments prepared.   But in the end, we did not want to set up an adversarial relationship with the district.  And we were happy with what we saw in-district.  


The final results of the IEP:


Personal Bi-Lateral FM System (newly purchased solely for her)
One Hour Per Week pull out with a TOD
One Hour Per Week in class with Intervention Specialist
Quarterly Assessment from the school SLP to monitor her articulation
Lesson plans sent home for pre-teaching


So, here we goooooo!


Today was her Orientation.

It was a great experience.  She is going to love her teacher.  And her room (it is super organized).  We visited the library and she was so excited to realize she would get to visit once a week all on her own (well, with the class... but still...).   As we left, we ran into the District Audiologist coming into the building to show Erin's FM equipment to the teacher.  She invited us to tag along and we spent an hour as she gave a brief overview to her teacher, the SLP and the Intervention Specialist.  


Erin was pretty overwhelmed by all the adult attention and the concept of having the teacher's voice piped directly into her processor was disconcerting to her.  I'll jump on in another day or two and give details of the impromptu Personal FM System session because I would hate for the details to be lost in this very long post. There are many things I would have done differently that I'd like to share.  In the end, a pack of stickers and free reign to decorate her equipment at-will calmed her apprehension.  I'm hopeful that will carry into the school year.


So, Thursday is her first bus ride and first regular day of K.  We don't plan to make a big production about her "situation" to the driver.  Instead we'll hand him/her a note explaining that she is deaf and cannot hear when her equipment is not functioning.  Or is snatched from her head.  (Eek!  Busses!  Who plans for that chaos???)


Signing off for now... and feeling thankful for piles of curly hair that hides electronic equipment from the view of 3rd graders.


  

Music-ick

I started my college career intending to train to become a Music Therapist. I eventually changed career paths, but did end up squeaking a Music Minor onto my degree. Naturally, I've maintained my love of music and continue to find my own form of therapy in my appreciation.

As with most parents who find out their child is deaf, one of my first heartbreaks was realizing that she would never hear music or learn to appreciate music. When I started researching Cochlear Implants and reading the blogs of adult CI users, I discovered this fear was unfounded. As I've written in previous posts, Toes is very fond of music (or, "Music-ick" as she prefers to call it) and has her favorites. Lately, a favorite has been Life is a Highway from the Cars movie (Rascal Flatts) and *anything* from The Little Mermaid.

Since we are in a phase where Erin has caught up to her peers in communication, yet hasn't started to tackle the issues of elementary school, I've decided I'd like to spend some of our free time expounding on Erin's fondness for music by encouraging her to sing, play her little keyboard, etc. My understanding from CI Adults I've spoken to is that often listening to a symphony can sound like 100s of voice all talking at once - it can be a bit much to even tolerate much less appreciate. So, I'll introduce other kid-friendly instruments into the equation over time. My hope is that as she learns to understand how each instruments sounds, she will begin to be able to appreciate more complex music and in time enjoy classical music in a live setting.

I'm obviously not a Music Therapist and am really just flying by the seat of my pants. But as long as she's enjoying the process, I'll keep it going.

Here is some video we captured earlier this week... it's short, so have a listen!

Transitions and Decisions

I cannot believe I haven't updated since March! There have been so many times I thought "This would make a great blog post..." since then. Yet, here I am... August. And no blog posts.

A quick update:

Erin turned 4 last month. Like so may CI Kiddos, she is doing amazingly well. She had an independent speech eval in March and tested at age level. We noted some issues on her receptive language, which was a surprise, since that was her strength in the beginning. Conversely, she tested at a 5 year old level in vocabulary. It was a bit of a lesson for us. We realized we had been spending far too much time focusing on expressive language and needed to pay more attention to her overall needs. We focused on the areas of concern and she quickly corrected the issues.

Transitions......

Erin starts her new school year in two weeks. She will be staying at the daycare center/school she has been at since she was 4 months old. The Itinerant Teacher of the Deaf that she worked with last year will be back and she is really looking forward to it, as am I.

Decisions...

Very early on, Dad to Toes and I made the decision to mainstream Erin. In fact, she was already in a mainstream daycare setting when she was diagnosed. Although we researched other options, we never saw a compelling reason to move her from where she was. And since she was doing so well, we planned (and plan) to continue on that path. We thought the decision to mainstream would be the biggest decision we would make outside of our communication methodology decision.

Well, the timing of her birthday has given us pause. Erin's birthday is in mid July... the cutoff for Kindergarten in our district is August 1. So, if we start Erin in Kindergarten at 5, she will be one of (if not *the*) youngest person in her class.

If not for her hearing impairment, I would likely be doing a "Phew!" move and would be thrilled that she made the cutoff. The concept of redshirting is a controversial one and I have done enough research to agree that it is not necessarily the best way to go. For "normal" kids.

But, as normal as Erin is, she will go into each academic year with larger challenges than her peers. As miraculous as CIs are, the reality is that she doesn't hear as clearly as her peers. The successful speech evals don't address the hearing deficit she will experience in the classrom. Mixing that with being on the young end of the class hits her with a double whammy. So, Dad to Toes and I are watching closely and evaluating how to proceed.

I am biased toward holding her back a year. I also have a mid July birthday. I never struggled academically, but I was definitely behind my peers socially. I can't help but think Erin will experience that same thing - but two-fold. The thought of her feeling socially out of place and adding in the complication of not being able to keep up with lunchroom chatter is heartbreaking.

Dad to Toes is biased toward starting her on time. He has a fall birthday. And he always felt awkwardly older than his peers from a social standpoint. He doesn't think we should sell her short and hold her back when we don't know yet how she will do.

We're both right.

We consulted Erin's TOD on the issue this past spring. She feels that it is far too early to make a decision. She said she often sees a huge leap in her students during the Pre-K year. So, we made the decision to send her into the preschool room with the kids who are scheduled to start Kindergarten in 2010. We realized that should we find she isn't keeping up with her peers and intervention doesn't correct the issue, it will be easier to hold her back a year than to convince the school to advance her a year.

So, here we are. Heading into Erin's final preschool year. We're currently in a transition period. Erin has caught up to her peers. She is a normal 4 year old. Yet, the challenges of the classroom and school setting looms. We're enjoying this period and feel so blessed to have the chance to deal with all the typical trials of caring for a 4 year old child.

Well, maybe "blessed" is too strong of a word... Because, Man! So far 4 has been a lot tougher than 3. There is nothing quite like dealing with bed-time pop outs with a child who can't hear you say "GET BACK TO BED!" ;-)







Postnote: To those who have emailed asking what our "ASL or Not to ASL" decision was... We are continuing with Erin's ASL education. She enjoys learning new signs as much as she enjoys learning new spoken words. We aren't making learning ASL the primary focus right now, but we are slowly incorporating it into our lives.

To ASL or not to ASL

(or, Another Reason Everyone Should Have an Apple iPhone)


Dad to Toes and I always planned to introduce Erin to a broader American Sign Language vocabulary than the typical half dozen "Baby Signs" that are so popular with parents these days. But, since she developed spoken language so quickly, we kept putting off learning ASL and broadening Erin's ASL vocabulary. It wasn't really intentional. Time just flew by and the urgency waned.

ASL is often a controversial subject. Strict AVT proponents don't encourage even lip reading in fear that it might detract from the child's ability to develop spoken language. On the opposite side, strict ASL Proponents argue that ASL is a deaf child's "native language" and should be the primary (if not only) form of communication utilized - regardless of what form of communication the child's family uses.

We have always taken a middle-of-the road view on the issue. We have never been the types to buy into any one path - we never felt there was a right or wrong way to teach Erin the skills she needs to succeed in life. So, we are always re-evaluating what Erin's needs are.

We have chosen to encourage lip reading - and as a result, we are able to have basic conversations with her even when she is not in sound. But there are times that Erin misses words and becomes frustrated that she cannot understand what we are saying. When it's an hour past bedtime and she's called us back in for the third time and her processors are in the drying unit... the last thing we want to do is pull out a processor so she can catch the missing word when we are trying to tell her she needs to go to sleep so we'll be ready to visit the *zoo* tomorrow. So, we've realized we need to re-start our ASL introduction.

What I've found really fascinating is that recently Erin has really been showing an interest in learning more signs beyond the baby signs. I don't know that she even understands that this is another language or that she could communicate completely with just her hands, but it's made us really thrilled about learning along with her.

I've been planning to check Signing Time videos out of the library to get things rolling. They are basic and child friendly and I have heard nothing but positive things about them. But I've been concerned that I may have a hard time convincing Erin to replace Blue's Clues with new videos during her TV time.

Then tonight I was checking out new Apps on iTunes and stumbled on the Best App Ever - Signing Time for the iPhone! It demonstrates the same signs that are available on Volumes 1 and 2 of the Signing Time Videos, complete with videos by Rachel Coleman. And all for $4.99. How awesome is that??

Erin loves playing preschool games on my phone when we're in the car or anywhere else she needs a distraction. She is going to flip out when she's checking my phone out the next time and finds a "game" that shows her new signs.

I am so excited that we found a great first step into ASL. Obviously, 48 signs is only a start. I just hope "zoo" is one of them.