Wednesday, October 5, 2011

Harlie's Book


I took pictures of all the pages of Harlie's book.  It is soft-bound and it has really done wonders.  I have received nothing but positive feedback from all the parents I've met so far, and teachers.  Each one of Harlie's classmates received their own book.  Then they passed one around to each kindergarten class.  And they put one in the library, too.  The teachers that I've spoken to so far have said they really enjoyed it and I really think it has made a huge impact on the way Harlie has been treated so far.  The kids have really been good to her and we are so, so thankful!!!

So, here it is (click on the picture to see it up close)...

I have to give the most credit to Cheryl Sale.  She actually wrote it - when I give information about Harlie, I tend to be a bit too medical.  But she really made it understandable for kids.  I had to fight the urge to say "She's been through 20+ surgeries and over a year of hospital stays - JUST HAVE A HEART WILL YA?!"

This book has been an awesome tool, so far.  And I highly recommend something like it for any kid who has some challenges.

Overall, I think kindergarten is great for her.  There are some challenges - for her and for me.  I never realized how often food is used as a motivator and/or reward for work.  I guess that probably contributed to the two full years it took to potty train her!  No M&Ms for her - just praise.  And the food rewards are just constant reminders of something that's different and difficult about her.   I hope that in time, the constant food around her and the excitement from the kids about getting food will make a positive impact on her.

Kindergarten is hard on me emotionally.  She is VERY tiny.  She's a good six inches shorter than everyone else in her class (or in the entire grade for that matter).  She is VERY slow - physically, I mean.  If the kids behind her in line don't pass her - there is a huge gap in the line.  And it's not just that she's slow.  She doesn't move the same way.  Her movements are slower and not as confident.

The other day she was waiting to go to the potty.  But when one kid would come out, by the time she got to her feet another kid would run right in front of her and go in.  I was with her that day because we didn't have a nurse.  It's just hard for a mom to see stuff like that.  And if she could talk - she would say, "hey, it's MY turn" which, she can say with her device but by the time she hit the buttons, they would already be in there and they wouldn't hear the deivce anyway.

They were working on patterns the other day using Goldfish - Cheddar and Pretzel ones.  The class chanted, "Cheddar, Cheddar, Pretzel" and Harlie didn't, of course.  I showed her the buttons on the device, but you have to press three buttons to say cheddar or pretzel.  So, she wouldn't be able to keep up with them anyway.  

And I guess it's because of her hearing impairment???  But she really doesn't pay attention.  She won't maintain eye contact when learning something new - especially if it's not something she's interested in.  I was told that when a young hearing impaired (HI) child listens to someone talk - if they miss one word of the sentence, they don't understand the whole sentence.  You need to have a good base of vocabulary in order to fill in the blanks.  And a young HI child doesn't have that language base yet.  So, imagine how easy it would be to lose interest when you don't understand most of what's being said.

I can't help but wonder if she might be ADD, too, since I've heard that siblings of a child with ADD are like 80% more likely to be ADD, too.  Or something like that.  God help us if she's ADD and needs meds for it - because eating is already a GIGANTIC challenge with her.  Add the appetite suppressant medication to the situation and I might just give up for real!

Homework is challenging, too.  She loses interest very fast.  Last night we worked on naming five things she can hear.  I know she can hear the telephone ringing, because when it does she signs and says, "telephone!"  But, even after we went through a few things, I have NO idea if she understood what we were doing.  She certainly didn't offer up anything she could hear.

It is both frustrating and worrisome.  I know she's smart.  I know she figures things out and remembers really well - but if she doesn't cooperate and show us (and her educators), what's going to happen to her???

But, this is partly why we put her in kindergarten this year.  Hopefully a run through once, and another year of maturity and knowledge, will greatly improve her attention span and willingness to cooperate when it comes to the "work" of school.

The best thing about kindergarten so far is her ability to socialize with her peers.  A couple of weeks ago I took her to see her local ENT for an ear issue (another blog post, I hope!).  While we were in the waiting room, another girl came in and Harlie tapped her on the shoulder and waved and said "Hi!"  I almost burst into tears right there!  That is the FIRST time she's ever initiated contact with a child she didn't know.  Before school, she would have just turned around and ignored her.  I was so happy!  What a positive impact kindergarten has had on her already!!!

Okay, I have to run.  I really hope I'll update soon.  I still have so much to share!!!


Kristen said...

Christy, I LOVE the book! It is perfect! What a special teacher who helped create it! I especially love the random little comments that other kids will really pay attention to, such as, "I like to play in the rain!" and "Isn't boating awesome!?" Too cute!

And I have a feeling that the growth you will see in Harlie (phyiscally, emotionally, capability wise, etc) this year will be amazing! It is only the beginning of October! And then, if you decide to have her go to Kindergarten again next year, then she won't be the smallest! Keep in mind that she is one of the youngest in her grade, so she would be on the small side anyway....not to mention that neither of her parents are exactly giants! ;)

I am in awe of you and her!

Ann said...

I love the book - great idea. I agree with Kristen - the progress you will see with Harlie this year will be exponential. I just love Harlie and her amazing spirit. Thanks for sharing her with us! :)

allie said...

Best. Book. Ever.

Kelly Brown said...

Awesome Job! I was teary reading the book!

Susan said...

The book is really fantastic! I will remember that when Ainsley goes to Kindergarten next year.

I know it's a tough adjustment. Just don't read too much into how she's doing. It's just Kindergarten, and she's probably on the younger side of her classmates. And then everything she's gone through, when all the other kids were just being. It takes time to catch up. It will get better. Kids of all abilities make it through the school system. I know Harlie's going to do it her way and she's going to do great! Hugs to you Christy. You are a fabulous mom!