IEP Review and Great Progress Communicating

We just finished reviewing Whitney's Individual Education Plan (IEP) for another year with the folks at her elementary school.  This happens annually and we use the time to review our goals for Whit as well as her accomplishments.  Whit has had another good year at school.  She's making progress on her goal of recognizing 175 sight words when she reads.  Potty training is also coming along, although many days are still a struggle.  But biggest area of improvement for Whit over the course of this last year has been with speech and communication.

A year ago, Whitney's ASL interpreter was reassigned to help a child who was more profoundly affected than Whit.  Melanie and I had mixed feelings at the time.  Whitney had used sign language heavily to understand and communicate in the classroom.  But in the year since, Whit has listened more attentively in class.  She's started to vocalize more when asked a question as well as started to use her communication software more effectively.  Whitney's teachers feel that this is due to Whitney having to perform all these tasks on her own now instead of being able to depend on her interpreter to do it for her.

It's exciting to see her understand and communicate more about what is going on around her. We're grateful to for the team in Whitney's classroom that works so hard for her.  She's made great strides over the course of her time with her current teachers.  They've expected a lot of her and Whitney hasn't gotten away with being lazy just because she has some physical disadvantages.  That's spurred her on to some great accomplishments over the last three years that she's been in her current classroom.  Next up, we're making plans for where Whitney will go to class in the fall and how it will affect her.  More on that soon.

Parenting and Worrying

I haven't posted anything in almost a month.  I don't think that's ever happened before.  Melanie and I have turned a bunch of our parenting energies from Whit to her little brother Liam lately.  Whitney is doing very well, and so is Liam for that matter.  We just have some things we're working through with regard to his behavior at school and his ability to concentrate on his classwork.

But everything going on in my children's lives got me to thinking about parenting in general.  Do we as parents ever really stop worrying?  I had the typical first time parent worries before Whitney was even born.  Then, when she arrived, Melanie and I worried that she wasn't going to make it.  Then we worried about getting her out of the hospital.  Then we worried about her seizures.  And when she got her 1p36 Deletion Syndrome diagnosis we really learned what it meant to worry.

As time has progressed and Whitney has thrived, my worries have turned to her younger brother and making sure he's reaching his potential too.  There was a point when I thought, "Having a typical child won't be nearly as worrisome as what I've gone through with Whitney."

The actual truth is that each of my children fills my heart with anxiety for their wellbeing and success.  Sometimes when I talk to Melanie on the phone on my lunch break, that's all we discuss.  So I guess, as I think this over, I've realized that life as a father will never, ever be worry free.  And that's okay.  I just need to learn to cope with concern and enjoy the moments.

Despite the challenges in my children's lives, I got to spend the evening relaxing with them yesterday.  We had dinner and finished up a bit of homework.  We had time to read some stories and Liam sang me a Halloween song he's learning in school.  We wrestled and tickled each other for a while before bed.  It was so nice!  Just doing normal fun stuff with my children helped force the longer term concerns into the background.  At least for a little while.

I guess parenting, special needs or not, will always be a challenge.  But stopping for a moment to enjoy my children seems to be a great way to keep the worries at bay.

Return to Dads and Donuts

Each year Whitney's school hosts a day where fathers can bring their kids to school and read them a book while they have a donut for breakfast.  It's one of my favorite school activities of the year because it's just for Whitney and me.  This year Whit rode to school with me and we talked a bit on the way.

When we got to the school, I could tell Whitney remembered doing this with me before.  She marched right into the gym and found the tables full of books that they were giving away to the kids.  And just like last year, she perused the selection until she found a book about Clifford the Big Red Dog.

Then we found a seat, had some donuts and milk and read all about Clifford's latest adventure.  Another little girl whose dad must have not been able to make it, joined us mid-story.  She was cute with Whitney and put her arm around her as she listened.  When we were done, she asked me why Whitney doesn't talk.  I told her that Whit actually does talk but she uses her hands to sign and make gestures instead of talking with her mouth.  The little girl seemed to understand.  The kids at Whitney's elementary school are used to seeing special needs students at recess, lunch and other activities because of the several cluster classes in the school.  And they've all been really accepting of Whitney.  It's actually really fun to watch them with her.

When the bell rang to indicate it was time for class, Whit gave me a tour of her school on the way.  She showed me the computer lab, where the bathrooms are and other things that interested her.  I finally had to ask someone where her classroom was.  The gentleman that helped us out knew Whitney by name and it's clear she knew him as well.  I believe he might have been the principal.

When we finally got to class Whit showed me her desk and we hung up her coat and backpack.  As other students arrived she greeted them and I watched them interact.  I really enjoyed seeing a bit more of Whitney's day for myself.  I usually get to hear things second hand.  Being there is person is really nice.  And it's obvious she really loves going to school.

Reading for Fun

The other night Melanie caught Whitney doing something we have never seen before.  She ran to get me and I quickly shot the video you see here.  It may not be totally clear but what she's doing here is reading herself a book.

Whitney went to the books we keep in our living room end table and picked out Brown Bear, Brown Bear, What Do You See?  Then she sat down on the floor and began to read it out loud and sign the words.  Whitney doesn't do consonants but you can hear the vowel sounds pretty clearly and see her sign some of the pages of the book.

We've really tried to encourage reading in our home and we have Whitney read to us as part of her regular routine.  And we've know for a while that she can read.  But it was so exciting to see that she likes to read and that she chose to read instead of doing something else, even if it was just for a few minutes.

She Knows What She Likes

Whitney is very clever when it comes to getting what she wants.  She knows what she likes and you can see her thinking out the process to get it.  Once example of this determination is playing music on her iPhone.  

Whitney has some favorite bands and albums that she listens to over and over.  But she can't read the names of the bands or albums on the phone's screen.  She's found a way around that though.  She's memorized the album cover art for the music she loves best.  When it's time to listen to something, she turns her phone on its side.  When she does this, she knows that the Music app shows a cascading row of album art that you can flick through.  Whit's a huge country fan, so she flicks through the art until she gets to her favorite album by Sugarland and can begin to play it.  She's also memorized the order of the tracks so she can get to her very favorite song on the first try every time.  This makes for a very happy music listener and many, many plays of the song Mean Girls in our home every day.

To reduce the monotony, I've tried to introduce new songs and artists.  Last night, I had her listen to Stevie Wonder's Superstition.  I figured it had a fun beat she'd like.  But Whit shot me a glance just after the intro, turned her phone on its side and flicked back to her Sugarland albums.  I guess you can't blame me for trying.  This girl definitely knows what she likes.  And she's learning how to get it.

Dads and Donuts

This morning, Whitney's elementary school hosted a special event before class.  Dads were invited to bring their students for donuts, milk and reading time in the cafeteria.  So instead of riding the bus, Whitney rode with me to the school.

When we arrived, Whitney and I found some donuts, some milk and a spot to sit and read her Disney Princess story book.  We looked at pictures of all of Whitney's favorite princesses.  Whit chugged her milk but refused to eat any donut.  So I did the honorable thing and ate hers after I finished my own.

We sat with a little boy in Whit's special ed class and her father.  Whit gave her little class mate a big hug as his dad explained that the two of them are pretty good friends at school.  This was a fun thing to learn since Whitney can't really tell us about the friends in her class.

Then before we left we saw that the school was giving away a free book to each child as a way to encourage kids to read.  Whitney and I perused the tables of books.  I suggested several and Whitney shook her head at each one.  Finally, I spotted Clifford the Big Red Dog.  I pointed the book out to Whitney.  She grabbed it and excitedly signed dog. She had clearly made her choice.  Whit's teacher told me later that Whit is a huge fan of Clifford.  They read about him all the time in class, so she'll love reading that one at home as well.

I enjoyed spending a some quality time my little lady this morning and I'm grateful for all the great programs we get to participate in at her school.  And I'm sure when I get home tonight I'll get to read Clifford with all three of my little book worms.

Individual Education Plan 2012

Each year Melanie and I meet with Whitney's team from the school district to discuss the educational plans that have been tailored especially for her.  Depending on the school district and the educators, these meetings can turn into quite a battle.  But thankfully, we've been given some great folks to work with and they do amazing things for Whitney.

In the classroom, the plan is to continue working on sight words, signs and reading.  Whitney loves this activity and is getting a lot out of it.  To support this, Whitney's speech therapist is going to be working more with Whit over the next year on reading comprehension.  This will be a big help, because there's still some question about how much Whitney is picking up by memorization and repetition and how much she is picking up because she understands what she reads.

Whitney's doing well with speech therapy.  She's starting to work more with the speech software on the iPad and iPhone and she loves it.  The big thing we're focusing on now is recognizing when it's time to work with the device versus playing with it.  That's tough for Whit because she absolutely loves to tap away at games, listen to music and watch videos on her iPhone.

We also found out that Whitney's interpreter will be moving with her to third grade next fall.  We love her and are thrilled she'll be sticking around.  Whitney gets along well with her.  And since Whit will likely change schools next fall, having the same interpreter will be a big help.

Whitney's physical therapist is beginning to step back a bit.  Whitney is really doing about everything she should with walking, sitting, standing, climbing stairs etc.  One of the goals from last year was to be able to go from sitting to standing in the middle of a room.  The therapist has worked long and hard with Whit on this goal and we all believe she is strong enough to do it, but Whitney refuses.  She's physically capable of accomplishing the task, but she doesn't want to.  So the therapist will check in regularly to see how Whitney is doing, but Whitney needs to decide it's time before she meets that goal.

Another big area we're pushing for 2012 is occupational therapy.  There are so many everyday tasks that take extra work for Whit to learn!  Buttoning a button, tying a shoe, holding a pen or pencil and of course using the bathroom.  Potty training has been a very drawn out thing for Whitney.  It's partly been a problem of lack of desire.  So we're going to put our heads together again and see if we can find some new ways to motivate her and make it happen.

Melanie and I are very pleased with the great progress Whitney is making and for all of the wonderful help she receives.  A big thank you to all the educators on team Whitney!  We're grateful for all you do and are excited for another big year.

Whitney Reads Her First Book

Whitney has been working with her sight words and has progressed on to reading short, simple books.  This one is her first, about people and their homes.  She reads it every day for practice.  But every time she smiles and is so proud of the accomplishment.  Melanie and I are proud of her too.  She may have special needs but she clearly has no limits.

Parent Teacher Conferences

A few weeks back Melanie and I were able to sit down with Whitney's second grade teacher and some of the classroom therapists and chat about her progress so far this school year.  As with any child, Whitney has her ups and downs at school, but she's really doing quite well.  Here are a few specifics:

Staying in her seat is getting better.  Last year this was a big problem.  Whit just wasn't content to stay at her desk during class and she would just get up an wander the room.  This year they're focusing more on helping her stay on task and it's having a positive effect.

She's making amazing progress on reading sight words.  The entire class is working with a new program where they memorize five sight words at a time with new words each week.  You can see a picture of the words Whitney's currently working on in this post.  Since Whit doesn't speak, they teach her to recognize the word as well as the sign the word at the same time.  They also teach the meaning of the word so she can put the whole thing together in her mind.  Her teacher and speech therapist report that she's picking up words like crazy and I have full confidence that one day not too many years down the road, Whitney will be able to sit down with a book and read it to herself.

Math is an area she struggles in.  Whitney just isn't interested.  She is bored by counting and adding unless you do it with her on an iPad.  She doesn't like to count objects or point out her numbers on a piece of paper.  But when you put things on a screen, her teachers have discovered that she's interested for at least long enough to complete the exercise.

Speech with the iPad and Proloquo2Go continues to progress.  Whitney has to ask for things in class by signing or pressing the buttons to say the words.  That way she learns that it's not just play time when she has the iPad. And they've had some success.  Whitney will make a request that's actually a full sentence, such as, "I want big bubbles."  We were so excited to hear this, because it will open the door for her to speak to anyone and everyone instead of just the few who sign.

Overall, we're very pleased with Whitney's progress at school.  She loves going and she's getting a lot out of it.

Reading Time

Years ago, when Whitney was diagnosed with 1p36 Deletion Syndrome, I would have never have believed that she would one day be learning to read.  In those days the doctors had told Melanie and I that so many things would never happen for our daughter.  And yet here we are.  In second grade, Whitney has been working on a new reading program that we are really excited about.

Non-verbal children who have some hearing loss don't learn to read like a typical child.  Typical children learn their letters and then sound out the words.  But Whitney can't sound out words even though she knows all of her letters.  So an entirely different approach is taken.  In class, the student is taught to memorize sight words and their meanings.  This requires quite a bit of repetition, but the program tries to make it more of a game so students don't get tired of it.

In class, Whitney is shown a page where a new word is presented.   The teacher signs the word and points to it.  Then on the next row the new word and some other word are listed.  Whitney has to look at both words and choose the one she's currently learning.  On the next row of the page three words are presented and Whitney needs to pick out her new word.  This way the word is being memorized by sight and can later be picked out on a page when reading a book.  The more words she memorizes, the closer she'll be to reading actual phrases and sentences.

Whitney loves books so much and she's really been working hard at this new reading program.  As she's reading her vocabulary is growing and she's learning new signs as well.  I can hardly wait for the day when she'll be able to sit down with some of her favorite easy reading books and enjoy them all by herself.  It's going to be absolutely life-changing.

(The accompanying image for this post is from The Fantastic Flying Books of Mr. Morris Lessmore, one of Whitney's favorite interactive books available for iPad.  It's an amazing children's story about the healing power of reading and it's a lot of fun too.)