Big Development!

On Friday night we had our Daisy Troop meeting.  I am happy to report that we have a Leader!  And I am VERY happy to report that it isn't ME!  Thank you very much Lynda R. for stepping up to the plate and leading this troop for us!  I am, however, her assistant.  Which will be fine.  I am actually looking forward to it!  We will meet twice a month beginning in January.  I really hope that Harlie likes it.  And I am still Cookie Mom.  Which, I hope will work out without too much stress.  So, mental note - if you want any Girl Scout cookies, you know who to call!  

On Monday, Murphy came home from school feeling crummy and complaining of a sore throat.  His voice was awful!  Well, to be totally honest, he sort of was like that Monday morning.  But we made him go to school anyway because he didn't have a fever.  We told him to try not to talk.  But, Monday afternoon he wanted to sleep and was clearly not feeling well.  He didn't even want to go to Cub Scouts - so that told me he really didn't feel good.  

Late Monday night I heard from our nurse, Terri, that she couldn't work on Tuesday because she was having car issues and needed to take care of that.  Total bummer.  Because that meant I would have two sick boys at home, which meant there was no way I could take Harlie to school.  So my only "healthy" child would have to stay home, too.  It really kills me when she misses school because of nursing.  

But there's no way around it.  It's not like I can call the agency at 8am and ask for a nurse for the day.  Even IF there was one available, I couldn't leave Harlie in his/her care with no training.  And let's face it - people have to miss work from time to time.  Even nurses.  It just sucks that it means that Harlie has to miss school - especially when she needs every second of education she can get.  

A friend of mine said "it sucks being a prisoner to nursing."  And that is so true.  The fact is that we simply could not live without it.  While it is "nice" to know that Harlie has an adult looking out for her all day since she's basically non-verbal - it would be much better for her to be a typical little girl who could go to school, ask the teacher for help when needed, and then come home and tell me about her day.  

Anyway, Terri worked really hard to rearrange some things so she could go to school with Harlie today.  And I was so appreciative!  At least our nurses know that even though we wish we didn't need them, we appreciate all their hard work and dedication to our family.  

And - both boys went back to school today, too!  Woohoo!  It was a fabulous moment when all my kids were somewhere else where they were supposed to be - at school!  Even though Murphy is still sporting a raspy voice, he was happy to go.  

So, the main reason why I wanted to blog tonight....  I think we have officially turned a HUGE corner in the Holton Household.  Drum roll please....

Harlie told me that she was HUNGRY today!!!  And then she sat and ate her entire meal (pureed Ham and Cheese sandwich, pears and cherries mixed with a little vanilla yogurt and 5 ounces of Pediasure) without even ONE refusal.  And she even self-fed some bites of the fruit!  

I just couldn't believe it.  She pointed to her belly and so I said, "Are you hungry?"  And she said (verbally) "yeah." (She can't say S's). So I signed "hungry" and then she signed it.  Then I got her Talker (which, by the way, she also asked for today when she got home from school - another big deal) and she used it to say "I feel hungry."  

Hallelujah!

For real.  

I felt that this was happening recently (her being hungry) but it has never been so clear as it was today.  When it happened last week, I doubted my understanding of her - or I doubted what she was trying to communicate to me.  But, there was no doubting today.  Nope.  She was HUNGRY!!!  And then she ATE!!!!  With NO fighting!!!  

I don't particularly enjoy feeding my 5-year old like a baby on soft foods only, but when she refuses and it's a battle - I HATE it.  So if she would just willingly eat her meals on a fairly regular basis, it would make a big difference in MY quality of life!  And, honestly, feeding has been going really well these last few weeks.  She still refuses some, of course, but for the most part, it's been going well.  So, I can't help but wonder how long she's been feeling hungry.  

Another bonus to her being hungry, is that maybe she'll tell us when we forget to feed her.  And I know that makes me/us sound horrible.  But, yes.  It's happened once or twice.  But, let's face it - life is busy and typical kids DON'T let you forget to feed them!  

So, hopefully this is a developmental milestone that is here to stay!  I wonder if it has anything to do with being in kindergarten?  

Honestly, I can't believe the progress she's making.  Some days are hard.  Like when I hear other moms talk about their 5-year old and the conversations they have and the things they tell them about their day at school.  But then, there are days like today, when I am SO grateful for something that most take for granted.  And I can see the progress - clear as day.  I have to try to not compare her to her peers.  But that's difficult to do when this world is so competitive.  

But, here's what I've seen progress since September:

She's more affectionate.

She's way more verbal.

She told me she's hungry.

She can write all her letters and numbers (but some of them might look funny).

She willingly (and happily) does her homework (writing assignments).

She draws pictures (rainbows especially).

She tries to walk up/down stairs using alternating steps on a regular basis.

She can blow a horn/whistle.

I think that's a lot of progress in just three months!!!  I am so proud of her!

And since I haven't posted pics in a while, here are a few random ones...

Harlie being silly a few weeks ago.

Cooper, just because.

Me and Harlie at the park weeks ago.

Harlie and I at the pumpkin patch (obviously) in October (obviously).

Okay, that's it for my rambling for tonight.  But don't worry - there will be more soon enough!

Thanks for reading!
~Christy

Harlie's Book

Finally!!!

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!!!
Thanks,
Christy

More Misc. Updates

If you've spoken to me this week, you know I've been stressed.  Kindergarten is hard.  Being Harlie's advocate for her education is hard.  But, I know it will get better.  Everything is just so... new.  The hearing impaired program went through a lot of changes this summer.  The program is new to this school.  The principal is new.  And everyone working with Harlie is new to us.  Our routine is new.  And the longer days and harder work is new.

We are going to have a meeting next week to discuss Harlie's communication issues.  I think I will feel much better after that.  It's just that I know we need to make some changes to her IEP (Individualized Educational Plan).  But, until then, they have to follow the one that's in place.

Also, the bus situation is really stressing me out.

Here's the skinny:  Harlie goes to a school out of our zone that's about a 10-12 minute drive away.  She is the farthest one from the school, so she is the first one to be picked up and the last one to be dropped off.  Our pick up time was 6:48am to be at school at 7:33am so she's in her seat by 7:50am.  Last week it changed to 6:53am.  And then, without telling me, they changed it to 6:41am - so she missed the bus that morning.  Even though it comes to our driveway, she missed the bus.  Then it went back to 6:48am.  It changes because kids are being added or removed from the route.

The drop off time was 2:50pm.

She is spending a lot of time on the bus in a day.  And it is negatively impacting her nutrition.  Today I spoke with Transportation.  Our new pick up time (as of the beginning of the conversation) was 6:40am!!!!  And drop off is 3:00pm!!!  That equals TWO HOURS on the bus each day!  I already wake her up at 6am.  And we struggle getting in an oral feeding for breakfast.  So, we have to tube her a lot in the mornings.

She eats lunch at 10:40am.  She self feeds a few ounces of fruit (at the most) and the rest is formula via her g-tube.  And then she doesn't eat again until she gets home after 3pm!  By the time she gets in, and we get her snack ready, she's eating at 3:30pm.

So, when we sit down for dinner, around 6pm, she isn't ready to eat again.

And she gets a fraction of real food than she's used to getting.  And this has it's own chain reaction of issues.  Real food plus formula works better for her body than just formula.

I explained this to Transportation and she was sympathetic.  But, the fact is that there are only two special needs buses that serve this school (take the kids that aren't zoned to go there, but go there for special programs).  One bus goes to a totally different area of town.  And one comes to our area.  I asked her when they add an additional bus to create another route and she said when the pick up time is 6:30am.

She went on ahead and pushed back the arrival time at school from 7:33am to 7:40am.  So, she changed our pick up time from 6:40am to 6:47am.  She also said she would look at the route to see if they can do anything to help.  But, I don't have high hopes.

So, we might have to drive her there in the mornings.  But, I'm stuck in the afternoons.  Cooper naps and there is no way I'm waking him every day and letting him get shorter naps five days a week.  Plus, picking her up means I'm not picking up Murphy.

And then I think about how different (easy) it is to get Murphy up, dressed, fed and to school.  Ugh.

That reminds me, Cooper is liking his new preschool.  Today was his second day.  And when I picked him up his teacher told me that he needs to work on his "listening skills."  Really?!?  I had no idea.  Is there anyone that doesn't need to work on their listening skills?  Especially a two (almost three) year old?    Funny stuff.

Back to Harlie again, she counted from 1 to 11 (the number of days till her birthday) on Wednesday - using her voice, in front of the whole class!  And her teacher told me that she asked for the "blue lizard" using her voice and she totally understood her!  She is trying to verbalize so much more now!!!

Her teacher also asked me if I wanted to provide a goody bag to keep in Harlie's class.  So, when parents bring in treats (cupcakes, cookies, etc.) for the whole class, she can pick something out of her goody bag so she isn't left out of the celebration.  Awesome!!!

I've started working on Harlie's private therapy schedule.  My plan (as of now) is for her to see her physical therapist and a prior speech therapist (to work on the device) on Thursday afternoons.  I think I might hire an additional speech therapist for another day to work on her verbalizations.  I've got messages out to two STs, so we'll see what we can work out.

I called our local rep for the company that makes Harlie's communication device.  I am going to schedule some time with him so he can train me on some things on the device.  He will also train school personnel, so hopefully we can work something out soon.

I made an appointment to see Harlie's plastic surgeon in October.  She's going to have to miss a whole day of school for that one.  That stings.  But, there is nothing I can do.  He only has clinic one day a month.  He said after the last surgery that he would want to wait years before doing another one.  And by the time summer gets here it will be almost THREE years since her last one.  That is so hard to believe.

We are also going to see her local ENT next week.  Ever since that episode when her ear bled, she keeps pointing to her ear and signing "broken" to tell me that her hearing aid isn't working - even though it IS.  So they worked us in for next week to have her look in her ear and then be tested by her audiologist.  I am hoping it's nothing serious or permanent.  And I'm trying not to worry about it.  But, of course I am!

I forgot that I haven't shown you Harlie's book!  I will take some pictures of it and post about that soon.  They are passing it around to all the kindergarten classes.  Today another class read it and a lot of the kids came up to Harlie on the playground to say hi.  For the most part they all seem to want to play with her.  But one girl wanted a closer look at everything and would not get out of Harlie's personal space.  Brandy tried to answer her questions (why this, why that) but she wasn't satisfied.  The worst part is that while she was turning her head and studying Harlie, she had a scrunched up look on her face.  When she wouldn't stop, Brandy had to send her away.  Brandy said that Harlie didn't seem to notice the girl's expression, she just wanted her to get out of her face.

As smart as Harlie is, I can't help but wonder if she's more aware than she's letting us know.

Well, it's late.  So, that's it for now.

Thanks!
~Christy

Quick Update

So much to blog, so little time...

Murphy

I can't remember if I told you that we had not restarted Murphy's ADD meds.  He gained four pounds over the summer (and he's still super skinny) and we were so enjoying having him hungry!!!  So, we were going to see if he could be successful without the meds since his teacher/class this year is a better fit (a calmer, less stimulating environment) for him.

I e-mailed his teacher Wednesday night (day 2) and let her know of his ADD diagnosis last year and that we had not restarted his meds and we would appreciate her feedback.  She e-mailed me back that he was doing "fine in some areas but having difficulty in others."  She said she wanted to meet with me or talk over the phone.  Darn it!!!

So, she called that afternoon and told me that he is a very sweet, respectful, social and likable kid.  But, that he cannot stay focused.  She said that he plays with the stuff in his desk.  When she was explaining something, she looked over and saw Murphy using two glue sticks as binoculars.  He clearly was not listening to a thing she was saying.

So, on Friday, we gave him his meds and sent him on his way.  The good news is that afternoon his teacher e-mailed me and said that he was so much better that day and that he was calm, focused, helpful and one of the best students in class!!!  At least we KNOW he needs the meds.  No more second-guessing ourselves on this one!

The bad news is that all day on Friday he only ate a few carrot sticks and a half of a granola bar.  All day!  It sucks that we have to chose between learning and nutrition.  They are both important!!!

Harlie

Kindergarten is going well for her, I think.  She seems to like it.  But, of course she can't tell me all about it.  Although I am THRILLED to report that she has been wearing her speaking valve (PMV) and she has been making a huge effort to verbalize.  The other day I asked her if she had a good day and she SAID - clear as a bell, "good day."  Murphy was in the kitchen and he could hear and understand her perfectly!  That was so awesome to hear!!!

There are some kinks to work out (which is totally expected).  Unfortunately, her communication device isn't being used the way it should.  And even more unfortunately, it's going to take some effort to get that to change.  After I found out they went all week without using her device I e-mailed her teacher that we need to have an IEP meeting.  The bad thing is that we had her last IEP meeting before we made the big decision to pursue using her device as a main means of communication.  So, she has been assigned a sign language interpreter.  But, that's not what she needs.  She can hear with her hearing aide on.  She just needs someone to help her use the device to speak.  So, we'll see what happens...

She missed the bus this morning.  Her original pick-up time was 6:48am.  On Thursday we were told the new pick-up time (starting Monday) would be 6:53am (YAY!).  So, this morning we went out at 6:53 and she was driving away.

The worst thing about this was that it was the one day that I had a commitment to be somewhere at 9am and it was an hour's drive to get there.  So, when she missed the bus at almost 7am, I still had to get a shower and get ready AND drive them to school (in the opposite direction of where I needed to go).  Oh, and my gas light was on, so I had to stop for gas.  Considering I woke up at 5:30 to start working on  getting her up and ready (I wake her at 6am after I give her a breathing treatment and meds) it was a busy morning and not a good one to miss the bus - it really stressed me out.  I felt so horrible that we didn't try harder to be at the end of the driveway.  But, we were feeding her breakfast and then on the way to the door Harlie said she had to go potty.

As it turns out, Brandy found out that after they told us our new pick-up time was 6:53, it got changed to 6:41!!!  And no one told us.  But the driver came at 6:48 and then waited the required TWO minutes and then left.  UGH!!!

So far there are a lot of issues with riding the bus.  And they are making me feel very stressed.  But, I really don't want to commit to driving them everyday.  So, I'm going to call Transportation tomorrow and see if they can do anything to fix the issues and make riding the bus a little more bearable.  As it stands right now - she spends TWO hours a day on the bus!!!  Doesn't that sound like it's too much?!?!?

I am also worried about the playground.  Jennifer went to school with her on Friday and she said that she was run over by the other kids.  She tried to help her play, but she's so slow compared to the other kids so they just run right over top of her.  Jennifer said that she and the other little girl that's hearing impaired gave up and just went and sat on the steps.  Ugh.

Tom measured the kids the other night on our measuring wall upstairs.  Cooper is one inch shorter than Harlie (and he's two years younger) and Harlie is SIX inches shorter than what Murphy was when he started Kindergarten.

Oh!  And Harlie lost her first tooth - naturally!!!  She's lost four in the past, but they were all due to surgical issues.  This is not the best picture - but it's all I got.  She didn't quite understand what all the fuss was about and had no interest in showing her teeth to the camera.

The picture was taken during a feeding.  Here are more photos from that awesome (note the heavy sarcasm) feeding session:

Are you still here?

Why do you make me eat this crap?

Honestly, I don't know who hates oral feedings more - me or her?

Cooper

Tomorrow is Cooper's first day at his new preschool!!!!  WOOHOO!!!  My house is a wreck, Harlie's food supply is low, laundry is piled high and paperwork is out of control.  Oh I can't wait to get some things accomplished around here!!!!  And I hope he really likes it, too.

Well, that's it for now.  More later!

Thanks!
~Christy

The First Day of School!

Whew!  What a day!  I must say that it went very well and we are so happy about that!  

There are some things we're going to change up for tomorrow.  I fully expected this week to be full of changes, trying to figure out what works best.  Normally, I go into Harlie's room and start her breathing treatments (2 meds, which takes about 15-20 minutes).  I put it on her while she's sleeping and don't wake her until it's finished.  While that's running, I draw up her Prevacid and baby aspirin (they are pills and need about 15 minutes to dissolve in water in a syringe).  I have to give that to her on an empty stomach, and 30 minutes before she gets any food.  

This morning, to save some time, I only gave her the Prevacid - it only takes a few seconds to dissolve.  And I'm going to give her the baby aspirin at night from now on.  

As for her breathing treatments, she gets two, one is given once a day, the other is given twice a day.  So, I'm going to reverse it and give her both tonight and then in the morning, I'll only have to give her one.  So, between those two changes, I'll save almost 30 minutes.

At any rate, she fought waking up, as usual.  I had to physically pick her up and put her feet on the floor.  She was a little upset.  She walked to her window, pulled the shade back and looked out (it was still DARK) and then turned around and looked at me, as if to say, "what the hell?"  

Once she was up and I got her teeth and hair brushed, she was already in a better mood.  Then I let her choose what she wanted to wear (between two outfits I laid out for her, of course).  And she hurried downstairs.

As soon as we got downstairs, it was almost time to go.  Brandy got here and put her shoes on, tubed her a can of breakfast and the bus pulled up at 6:48am sharp.

I didn't even think about the weather and let her walk out the door in a tank top and shorts and it was chilly and rainy!  I had to run back in the house to get her a raincoat.  But, Harlie is VERY hot-natured so she was probably just fine.  We forgot to put on her harness before she got on the bus.  And then when I put it on, it was too big, so I had to run back in the house to get a smaller extension for it, so it would fit.  So, the bus was at our house for a little longer than it should have been.  Tomorrow will be better for sure.

Harlie had no problem getting on the bus.  And even though she's gotten on the bus before - it felt SO very different for me.  I definitely had to fight back the tears.  Okay, fine.  Yes, I cried a little.  Tears of both fear and joy.

Once she was off, it was time to focus on Murphy.  I took a wipe board and wrote his "to do" list and he went through everything on the list without one word from us.  I can't tell you how much better this made our morning.  Seriously - the best idea I've had so far.  He was ready to go and wearing his backpack - 40 minutes before we had to leave the house.  When Tom told him to take it off because we weren't leaving for a while, he said that it was "comfortable."

Finally, 7:30 rolled around and it was time to leave.  And boy was it yucky out!  It rained last year on the first day of school, too.

I cannot tell you how different his class is this year from last year.  All the kids were in their seats, quiet and calm and ready for class.  Last year it was pure chaos with kids moving in all directions working on their check-in procedure.  I am really excited to see how he does in this calmer environment.

For various reasons (mainly due to the holiday weekend) we did not have Murphy's meds ready to give to him today.  But, after seeing the class environment, I think we might see how he does without the meds.  So, we're going to hold off on them for a few days.

When I picked him up from school today I asked him how the first day was and he said, "It was awesome!!!"  How great is that?  He said he really likes his teacher.  And they went to the library and he checked out a chapter book - and no Halloween books!!!  Wow!!

About an hour or so into the day, I sent Brandy a text to see how Harlie was doing.  She said that she was doing well, dancing in circle time and that she heard Harlie answer a color question with her device.  I asked her how the other kids were and Brandy said they were fine.  They just had some questions about why she doesn't talk.  The teacher answered them and then moved on with class.

After lunch Brandy sent me a text to let me know that Harlie fed herself half her peaches and drank an ounce of formula, with NO problem!!!  Then Brandy fed her the rest, discreetly, with no resistance from her at all!!!  That girl kills me.

She also said that she asked Harlie if she was having fun and Harlie said "yes."  Then she asked her if she liked kindergarten and she said "yes."  Yay!

Overall, I think she had a great day.  Later on, her teacher called and said that she did very well.  She followed instructions just fine.  She didn't want to participate in some activities, but after some prodding, she finally gave in and did what she was told (like coloring or something).  And then she said that they have PE tomorrow, so she wanted to know what she could/couldn't do.

After they were both home from school, I was immediately exhausted!!!  Come bedtime - they all went to bed with no problems and were sounds asleep in just a few minutes.  Ahhh....

Speaking of sleep....time for me, too!  Thank you!!
~Christy

The Night Before Kindergarten

Another week has passed since my last post...  I hate when that happens.  I've definitely gotten to the point where I need to blog.  Even if I had no readers, I would still blog, and then feel better.  It just helps me to think things over, find the positive, and then hold on to it, until I move on to the next thing.

I have a lot to tell you, but will have to get you caught up later on this week.  For now, I want to talk about how tomorrow is Harlie's first day of Kindergarten!

What I'm excited about:

1)  The fact that she's here, alive and doing so great that she's able to start Kindergarten at all.  This is a day I never dared to dream about.  Since before she was even born, the focus has been on getting through THIS day and worrying about tomorrow, tomorrow.

2)  The hope that being in a general education class will have a profound, positive affect on her in all areas and that she will begin to socialize with her peers in a more age appropriate manner.

3)  The possibility of what she can/will learn this year with more hours in a classroom and the support of a brand new team.

What I'm proud of:

The fact that she's spent more than ONE YEAR of her life confined to a hospital bed, recovering from 20 surgeries and many other procedures yet she's still academically ready to start Kindergarten.  Isn't that AMAZING?!?!?  This is something I must remind myself of if/when I doubt her abilities OR, more importantly, OTHERS doubt her abilities.

What I'm afraid of:

1)  Her not cooperating or adjusting to the new demands of school.

2)  Other kids.  More specifically, kids not accepting of her.

3)  Her noticing the reactions of others (and hearing the comments/questions) and then it affecting the way she views herself.  I think this is probably not an "if" it happens, but a "when" it happens.  And I SO don't want it to happen.

4)  Educators not connecting with her or thinking she doesn't know or can't learn.

5)  That she'll get hurt - physically, I mean.  That she'll get knocked down in the hallway or on the playground and that she will seriously hurt herself.  Her spine is still healing and her jaw is full of screws.  What if she gets hit by a ball in the chest?  I've heard stories of that killing kids with heart defects!  Okay, deep breaths.  I know that's not likely to happen, but it's still something of which, I'm afraid.

6)  Our new morning schedule and her bus arrival time - 6:48am!!!  Students have to be in class by 7:50.  We must be the furthest away, so we are the first pick-up.  Since she's special needs attending a different school than where she's zoned to go - they send a bus to our house to pick her up.  Harlie is NOT a morning person.  I can count on one hand how many times she's woken up on her own without one of us having to go and wake her up.  And most of time you have to physically "help" her get out of bed.

What I'm sad about:

That my daughter does not attend the same school as her brother(s).  I cannot tell you how incredibly sad this makes me.  But I'll try.  When we bought this house - we didn't buy it for the house, but more for it's location - we could walk our kids to school!  When we had Cooper, we were thrilled that she would be flanked by two brothers who could take up for her and look out for her.  We had no idea that they would be no where near her (like miles and miles away) when she went to school.

I am terribly sad that she will be all alone, in a completely different school district.  Murphy is sad, too.  At first he was so excited that she would be going to Kindergarten and he said, "With me at my school?"  And we had to say no.  And then he hung his head.   And I'm sad for Cooper, too.  Because he'll end up being alone, too.  It's just not how it should be when you have three kids so close in age.

I think of how different this experience would be for all of us if tomorrow morning, we could all leave the house at 7:30 and walk down the street together.  But those are the images I have to shut out from my mind.  Just like her not having a trach or her being able to speak or eat regular food.  It is just not to be for now.  So no use torturing myself.

I probably should have ended with the "What I'm excited about" items.  I would prefer to end my posts on something positive.  And I am happy that she's starting kindergarten.  I really am!  But it also kinda feels like I'm throwing her to the wolves.  And for the moment, I am glad for the trach so that Brandy will be with her.  Ahhh, our nurses.  I am so, so thankful for our nurses.

Well, that's it for tonight.  Please send positive thoughts for her (but mostly for me) that all will go beautifully and that kindergarten will be a wonderful experience for her (and for me).

Thank you!
~Christy

Transitions and Kindergarten Screening

It is now Monday night.  I wrote this post on Sunday night.  I was a little upset and I thought about deleting it - but these feelings were real at the time and it just illustrates some of the challenges with having a special needs child.  So, I'm posting it - with today's update at the end.

*****

With just two weeks to go until school starts - there's a lot going on.  I'm pretty upset right now, so I'll try to be as understandable as possible.

Change in School Location
Last year (and the year before that) Harlie went to a different school than where she will go to kindergarten.  That school used to hold the Hearing Impaired (HI) program.  But, the county is trying to establish "feeder patterns" in the special education areas so that kids in the same program stay together as they age.  And this is the first year, so you know how that could go.

Sounds like a good concept.  But, I have to admit that I was sad.  I liked where she was, and she seemed comfortable there.  People knew her.  And who actually likes change anyway?  Especially when it comes to your special needs kid?  But, everyone really talked up the principal at the new school and said she had a special education background, so it was a good fit.

We met the principal and toured the school along with a group of HI kids who would be transitioning to this new location as well.  There's only a handful.  And only a total of four starting kindergarten (two who speak, so they don't need interpreters/instructional aides) and the other two is Harlie and a classmate of hers from the previous school (who do not speak and require an interpreter/instructional aide).  All these kids also see a HI teacher (in addition to their regular teacher) during the day as well.

Well, just a few weeks ago I heard that the principal has left the school.  And she was only there for two years.  And the one before her was there for a short time as well.  So, now I know that the school has been through a lot of change in the past few years.  And they have not hired her replacement.  So, the school has NO principal.  And school starts in two weeks.

At the ice cream social on Friday, the resource teacher spoke in place of the principal.  It appears that there is no assistant principal, so she will be filling in as the principal until one is hired.  So, you know that she will be stretched pretty thin.

Staff Changes
Harlie did not need an interpreter/instructional aide last year since she was in preschool (she will require one now, though).  But she did get HI instruction from an HI teacher.  And she is awesome and is so good with Harlie.  She challenges Harlie in a way I cannot.  I'm her mother, after all.  So, I have been very thankful for this HI teacher.  She is also the one that wrote this book that I haven't been able to show you yet (as soon as I get the books, I will show you).

During our last IEP meeting at the end of the school year, the county's audiologist was in attendance.  I asked her if Harlie would keep the same HI teacher at the new school.  She wouldn't tell me then because she didn't have all the assignments done.

During the summer, I found out that we would have the same HI teacher!  YAY!  I was so relieved because I really feel that so much of Harlie's success/failure is dependent on the person in this position.  I also found out the county's audiologist has since retired.  And they are looking to fill her position.

I also learned that they have not filled the interpreter/instructional aide position.  At least, the last I heard they had not.  And I really want to meet this person and talk to them before school starts.  Now that we are going headstrong with the communication device, this person needs to be aware and on board - and educated on the device so she can help Harlie use it during the day.  This person will be beside Harlie most of the day and her success with the device is dependent on this person helping her with it at school.

But that person doesn't exist yet.  And there's two weeks before school starts.  What if they can't find someone qualified?  Do they hire anyone just to get a body in there?

Can you tell I'm slightly stressed about it?

And then tonight, I get an e-mail from her HI teacher telling me that she doesn't think she's going to be at Harlie's school after all.  And she doesn't know who will be assigned to Harlie yet.  What?!?!  I can't tell you how much I HATE to lose her support.  She has been awesome with Harlie and I really like her.  It truly saddens me to lose her!!!

I can't help but feel that everywhere people are going is more important than the places they're leaving.  And I hate to sound negative, but I don't really see any evidence of an existing HI program anymore.  And if there's no HI staff there - and there's no HI staff at Harlie's home school just a few houses down my street - then why don't I just send her to our home school with her brother?

I'm really trying hard not to freak out right now.

But, I'm already doubting "our" decision to send her to kindergarten.  There just seems to be too much transition and instability right now.  Are they scrambling to fill these positions and will the quality of the person be sacrificed for a warm body?  Ultimately Harlie will suffer if the county doesn't figure things out.

And who the heck do I talk to about all this?  Who's my point of contact?  And if I don't send her to kindergarten where would I send her?

The only person left for me to talk to about this would be Harlie's kindergarten teacher.  And I'm seeing her tomorrow - but only for a pre-screening with Harlie (something she does for all the students) and I think it's only a 15 minute slot.  Certainly no time for discussing all this stuff.

You know, I'm just sad and scared.  Everyone I was trusting to help Harlie be all she could be is gone.  And can I just say how FREAKING hard and scary it is to have to COUNT on other people to help my child succeed?  I am counting on the county to provide HI support so Harlie can learn in a way that works with her hearing impairment.  The gap between kids who are hearing and those who are impaired only widens with each passing year - unless you intensify the support as soon as possible.

At this current time I do not feel that the support is intensified.

Nursing Changes
And as if that isn't enough change and instability, Brandy (Harlie's nurse who will be going to school with Harlie most) is pregnant.  YAY for her!  She is due on Thanksgiving and she's having a girl.  At the beginning of her pregnancy, I joked that I thought Harlie needed a little brother or sister (you know, since Brandy is family now).  Anyway, while this is wonderful news for her and her husband, it does impact us a bit.  Right now the plan is that she will return after a maternity leave.  And then I will keep her baby during the day, so she can go with Harlie to school.

But in her absence, we need a nurse to go with Harlie to school.  And this scares the crap out of me.  I haven't had to find a nurse in over four years!!!  I admit - we are spoiled in this area.  We have been truly blessed and lucky.   But now I have to find someone.  That is not an easy task.  And it's complicated by the fact that I really don't know when we'll need that person to start (since we don't know when Brandy will have the baby).  And if I interview someone now - they could be assigned to another patient and then not want to leave that assignment to work with Harlie, especially since it wouldn't be a permanent position (at least that's the plan).  So, I'm going to have to wait until much closer to November till I can really start looking seriously.

And I also know that things don't always go according to plan.  And Brandy could have this little girl and decide that maybe she doesn't want to come back to work.  And while I sincerely hope that doesn't happen - I would totally understand and respect her decision.

So, needless to say, I'm stressed.  More so than I've felt in a really, really long time.  BUT - I am trying to keep things in check - because I am really hoping that things will work out.  Trying to have faith in the county since they have done well by us so far.  Keeping my fingers crossed that these changes will be good when I look back on them later.

Monday Night Update

We had the screening with Harlie's kindergarten teacher today.  So, a lot has "changed" since my post from last night.

First - her HI teacher was there and Harlie's main teacher must have realized it would take longer, so we had a longer time slot.  And we were able to talk about a lot of this stuff.

Harlie now has an interpreter/instructional aide - and she is someone who has worked with Harlie in the past at her last school.  So, she's not a new hire.  I guess they had to do a lot of shifting around since the head of the department retired.

And she has an HI teacher, and she said that she is wonderful and will be great with Harlie.

So, it appears that maybe I let my fears get the best of me last night and I don't need to do anything drastic.  And there is an HI program, they were just figuring out all the changes.  I am normally so much calmer than I was last night.  But, I have to say that my emotions are all over the place right now.  At this point I just need school to start already so I can get over this "hump."

The screening itself didn't go so well.  She wouldn't write her name, or answer questions about what shape was what and barely did the abc's in sign.  I should have realized it was doomed from the start...

Both Harlie and Cooper have been fighting some sickness for a couple of weeks.  Harlie actually started to get sick right before Tom's reunion and our trip out of town (which I still haven't written about or posted pictures - soon).  Harlie went on antibiotics and got better.  A few days after the last dose, she started to get sick again.  And Cooper's been coughing something terrible for the whole time, too.

They were both at their worst on Sunday (Sunday night was AWFUL and I only got 3 hours of sleep), so first thing Monday morning, I called the pediatrician.  They were booked, but squeezed us in at 9:40.  We had an appointment with the supply company (who sends a respiratory therapist to our house once a month to see Harlie and check her equipment) at 9:30.  And we had to be at Harlie's school at 11am.

So, I called the supply company and told the person who answered that I needed to reschedule our morning appointment for the day.  She transferred me to someone's voicemail.  I left a detailed message to NOT send the RT at 9:30.

As we were getting in the car to go to the doctor's appointment, my doorbell rings and it is the RT and a trainee from the supply company.  Of course, they didn't get my message.  When I told the RT, she said that the person I left the message with is on vacation this week.  Seriously?  That moron sent me to a person's voicemail who is on vacation to deal with rescheduling an appointment for an hour away?  Geez.  And it didn't help that his voicemail message did NOT say he was out for the week.  Grrrr!!!!

I told her we were leaving, she could check Harlie really quick while I got Cooper in the car and then she would have to check the equipment after we left.

Oh, and I forgot to mention that Murphy had a friend sleep over Sunday night and they were running around.  And my niece (thank God for Maggie!) came to stay with the boys while Brandy and I took Harlie and Cooper to the doc.

Oh, and I couldn't find one of my flip flops.  And that really ticked me off because I am CONSTANTLY picking up everyone else's freaking shoes and putting them away (including my own, of course) and now it's MY damn shoe that's gone missing.  Where's the justice I ask???

So, I run and put Cooper in the car and of course they parked in the driveway.  Behind me.  So I have to go tell the RT to move it.  Seriously - the house was CRAZY and this poor new trainee was just looking around.  The RT said that she warned the new girl that it was organized chaos.  I wish I could agree with that.

Luckily this RT has known us for a long time and is really nice (she's been coming since Harlie was a wee babe) and she was fine with staying after we left to do the equipment check.  And while I was running around wrestling Cooper to put his shoes on and continuing to look for mine - I told her to please check Harlie's pulse ox cord which is fraying and probably needs to be replaced.

We finally get in the car at 9:38 - and there is NO way we are going to be at the doc's office in two minutes.  So, we're late.  Luckily this doc's office is awesome and goes out of their way for us so they were very understanding.

By the time we get back into a room it is 10am and it doesn't look like we're going to be on time for the screening at 11am.  So, I ask our nurse if there is any way possible to get us out in time.  Which I feel awful asking for since I was LATE.

So, doc looks in Harlie's ear - no big deal.  But as soon as she sits up blood is pouring from her ear.  This is the second time that's happened after just looking in her ear.  I mean, I get that she bleeds easily (since she's on aspirin daily, which is a blood thinner) but what is causing the bleeding?  He said he didn't see anything in there and he didn't feel like he scraped her or anything.

So, we wipe her off and with four prescriptions in hand, go running out the door.

We rush home, drop Cooper off with Maggie and the boys and rush to the screening.  We were about 10 minutes late for that.  I take a deep breath and wait for her teacher.  I turn around and look at Harlie and her whole right side of her face is covered in blood.  Nice.  She continued to bleed for an hour and a half!  Which means that her canal was full of blood - and she appeared to not be able to hear a damn thing.

Perfect!  UGH!!!!

Which is why the screening didn't go so well.  Oh, and she's sick.  And her tummy was upset and she had to go potty several times.  Those things didn't help.

And she was acting super shy with her teacher.  Which I totally understand.  There was a sheet and it had a Name: __________ slot and then some shapes and then the alphabet.  She saw the alphabet and when we asked her to write her name on the line, she started to write the alphabet on the line.

Then when she was asked "which one is the square" she pointed to the circle.  Now - I know how parents can be - but I PROMISE you - she knows her shapes!!!

Her teacher had her move next to her thinking that might help.  And when she pointed to a shape and said "what is this" Harlie signed square - but did it under the table.  Luckily this teacher is sharp and saw it and told us that she thought she signed it (she doesn't know sign - but has ordered a bunch of signing materials for the class and seems really excited about learning it).

Then, when Harlie signed the alphabet (the letters were not in order) she kept her hand on the table and barely moved her fingers.  It was as if she were whispering!!!  But in sign!!!  It was so interesting to watch!  And incredibly frustrating!!!

Luckily her HI teacher was there and she told the teacher that she knew that Harlie knows this stuff.  The teacher said that this behavior is completely normal - and I shouldn't worry.

Okay.  So, that was that.  It was noon and Brandy and I were pooped!  It was a crazy morning.  Then I took Murphy's friend home, fed Harlie, Brandy and I had lunch, and then I made some phone calls.  I tried to get an appointment with a local ENT to check out this bleeding ear situation.  But her next available appointment isn't until November 9th.  Grrrr.  So, I e-mailed her ENT in DC to ask him what he thinks about it.  I am just trying to avoid going there (DC) because Harlie would have to miss a whole day of school.  So, we'll see what he says and I'll go from there.

Tomorrow we are going to Northern Virginia for Harlie's appointment with her surgeon to see if she can stop wearing that back brace and resume normal activity.  My fingers are crossed!!!

Whew!  This has been a very long post!!!  If you're still reading this - you are a good person.

Thank you!
~Christy

Interesting day.

Today was a great day for Harlie at camp.  This camp was two weeks long, and the last day is tomorrow (Friday).  The kids and staff have been GREAT with her and I really feel that it has been a wonderful experience for her.  Yesterday (Wednesday) she was all hot to trot to get out of the house.  And it wasn't even 9am yet.  We had to keep on telling her we had to wait.

When I picked Brandy and Harlie up today, Brandy said she had a great day.  They had a "field trip" to the library, which is right next door.  Brandy got some video (which I still need to upload) of Harlie dancing the hula with some friends.  It was so cute to see her having fun with girls!!!  Yay!  She's socializing and having fun with her peers!  Hallelujah!

And another thing that I thought was funny - Harlie picked out her own outfit today (a dress).  And the two girls that she was dancing with have the same dress and have worn it to camp.  And they've commented that they have the same one.  I wonder if Harlie realizes it too, and wanted to wear it because of that.  Let's just go with that.  Because it would be pretty cool if she was influenced a little by her peers.  Maybe, just maybe that will happen with eating.

So, there is this one boy who apparently loves Harlie.  He sounds like he's a pretty funny kid.  One of the first days at camp, he went and sat next to Brandy and said, "So, what's new with you?"  So, today when the staff told him to do something (like, "E, eat your snack.") he said, "Wait! I just want to talk to Harlie's mom!"  He clearly thinks Brandy is her mom.

And then he said to Harlie, "I love you, Harlie.  Even though you held us up."  He was referring to how she was pretty slow walking to the library, even though she didn't technically hold them up.  Apparently he was waiting for her.

And then later he said, "I still love you and I'll always love you."  Oh, this kid is cracking me up!

Brandy said that there is another little boy that really likes Harlie, too.  Today one of them (E) was the line leader and the other boy was the caboose.  They both called Harlie to stand next to them in line.

I can tell you two things:

1.  I would never have guessed in a million years that she would have a boy telling her he loves her at this age.

2.  My heart swells at the thought that these kids have grown to love her over the period of two weeks.  I know how awesome she is - but I wasn't expecting for kids her age to realize it.  Tears of joy, my friends.  Tears of joy.

Tomorrow they are having an ice cream party during the last hour of camp and families are invited.  I can't wait to talk to these kids moms to tell them how great their kids are!

Then, in the afternoon, Harlie's new elementary school had an ice cream social for rising kindergartners. It was held in the gym so it was super loud.  Which meant that you couldn't hear Harlie's communication device.  And she wasn't feeling social, at all.  So, that was awkward.

And even though I got to hear how loved Harlie is earlier today - it was STILL so incredibly hard to see how other kids look at Harlie for the first time.  It's not that I blame them.  They've never seen a trach before - they have no idea what it is.  Her eye is probably something they notice pretty quickly.  They just need a moment to take her in - and I get that.  But it is STILL so hard to watch.  And I don't think she notices that yet.  How is she going to feel when she sees that reaction, too?   I am so afraid of what that will do to her.

Anyway, some moms organized a group of older elementary-aged kids to go around and introduce themselves (how cute is that?!) and it was really hard (emotionally for me, I mean) to have to tell them what she was "saying" since they couldn't hear the device.  I had to say, "She just said her name is Harlie."  And something about that just made me want to cry.

And then I met Harlie's teacher.  And tears started to well up - and I had to choke them down.  It was all just so real.  So scary.  And it breaks my heart that I don't know if she's excited about kindergarten or if she even knows what it is or that she's going there this year.  And I thought to myself - how many conversations am I going to have with this teacher (who is apparently super awesome - seriously, I've heard nothing but great things about how great of a teacher she is) and what are those conversations going to be like?  Good?  Bad?  Ugh.

I just can't believe that she's going to go to kindergarten and I can't believe that she's almost FIVE years old.  I have been thinking so much about the past five years and all that's happened.  All we've been through.  And all the people that we're going to meet that have no idea.  There's such a comfort with being around people who know - people who get her - and me - without me having to do anything.  And I just feel like we are so vulnerable now.  It's weird.  And scary.  And I guess I'm thankful that Harlie doesn't feel any of that yet.

I introduced Brandy to her teacher and we talked briefly about where to sit Harlie.  Her teacher told Brandy that they have a spot all ready for her (Brandy, I mean).  I can't remember if I told you or not - but this school has "pods" meaning that you walk through one door, into a big room - and off that room are the doors to the kindergarten classes.  So, if Harlie is sitting close to the front of the room, Brandy can be in the outer room - still able to hear and see her - but not be right on top of her.  And she said that she saw the book about Harlie (another post, sorry!) and it all just made me think about how much work and effort so many people have to put in for Harlie and for us.  I'm so thankful for all of you that go out of your way for us - but I can't help but wish that no one had to.

And then, a mom came up to me to introduce herself.  She said her son had introduced himself to Harlie earlier and that he went to her and told her there was a girl with a hearing aid, like his sister.  So, we started talking about her daughter's hearing issues - when the mom said that her daughter has Goldenhar Syndrome.  Whoa!  Say what????

Her daughter goes to the same school, but she's going into third grade.  Her daughter has the same ear as Harlie's left one and she wears a BAHA (bone anchored hearing aid).  But she's not trached and never was.  And she eats and talks.  I hope they get to meet!

Anyway, after less than an hour, Harlie was ready to go.  I think it might have been a little loud for her comfort.  And probably a little too socially overwhelming.

Well, that's it for now.  More later!
Thanks!
~Christy

Eating and Talking

Hello.  Yes, I'm still alive.  It is so hard to finally break the silence after I haven't blogged in a while.  And when I don't blog it means I'm really busy, feeling crappy, or a little bit of both (sometimes a lot of both!).  And I suppose it's been a little of both this time.  I'm trying to enjoy the summer - but, frankly, have been too busy to do that.  And I think I'm tired of thinking about Harlie starting kindergarten.  

The whole eating by mouth thing is REALLY stressing me out.  I don't see how in the world Brandy is going to be able to feed her by mouth at school - or at least in the cafeteria at the same time as her classmates.  Harlie has decided to go through another very uncooperative phase in eating.  It is so frustrating.  I don't understand what makes her do this.  You would think after YEARS of this that she would realize that we aren't giving up.  She isn't going to win.  And the food will get in her tummy one way or another - so just eat it already!!!!   Ugh.  

There is a small sliver of hope that she will be in a setting with kids eating and she will want to eat, too.  But, I don't think that's going to happen.  She has been in a setting like that to a smaller degree and it didn't have any affect on her at all.  She doesn't WANT to eat by mouth.  Period.  And trust me when I say that there are days I don't WANT to feed her by mouth, either.

When she is uncooperative (like she's been lately), feeding her in the cafeteria is not going to work.  Not without completely making her look just awful to her classmates.  And the thought of them seeing her like that makes me ill.  So that means that Brandy will have to feed her elsewhere.  And thinking about it just makes my heart hurt.  And it makes me wish that her jaw didn't form the way it did.  It created such a horrible chain reaction.  And I hate thinking like that.  It's such a waste of time and energy.   She was born with these challenges and that's just the way it is.  Wishing it away is pointless.  But sometimes my thoughts go there, and I have to shake my head and make them go away.  I do wish things were different.  

On occasion she'll have a great day, and she'll willingly go get a bib and then willingly get in her high chair.  (oh, how I hate writing all that when she's almost FIVE years old!)  I get all hopeful that she's hungry and she realizes that feeling and has finally learned that eating food alleviates the discomfort of hunger.  But then she won't do it again for weeks.  

And on Friday I spent all day (literally all day) in the kitchen making her food and pureeing it.  I was in there so long that my legs were tired and sore.  And then I remembered that I was going to run 12 miles the next morning.  Ugh!!  Talk about poor planning!  And all for a girl that hates to eat!!!  

Luckily, Saturday was a cool day and what a difference 10 degrees makes!  It ended up being my best run so far!  

So, Kinder Camp is going well.  Harlie seems to like it.  The kids have been really good and accepting of her.  And what really surprised me is how concerned they are about her.  They have asked Brandy a lot of questions and want to know that she doesn't hurt and that she'll be okay one day.  One little boy asked her if Harlie would die if she didn't have that thing in her neck.  Brandy said that she told him that she needs it to breathe, and let him come to his own conclusions.

They have snack time while there, but that is so close to Harlie's breakfast there is no way that she would eat then.  So, she just does something else.  One of the kids asked Brandy why she doesn't eat a snack like they do.  Brandy just told him that she doesn't like snacks.  They also want to know if she'll ever be able to talk.  

Last week Harlie's speech therapist went to camp and worked with her there, focusing on using her device to talk to the other kids.  It appears that Harlie thinks that a lot of communication (verbal, I mean) is unnecessary.  She probably thinks, why do I have to ask you for a paint brush, when we are doing a painting activity?  Isn't it obvious that I need a paintbrush?  And paint?  And paper?  

We say so many words because speaking is easy.  But, signing and using a communication device is not easy.  It's not natural.  And it takes thought and effort.  So, during the painting activity she came to the conclusion that painting wasn't worth all the work of having to use the device.  So, she quit.  

I will say that she is making a lot of progress.  She willingly went to the device (when Brandy and I were in the middle of a conversation) and said, "Brandy, I want to watch tv."  I think that is huge.  I have so much more to tell you about the device, but can't go into it now.  I have to go to sleep since I have to run early in the morning.  

More soon!

Thanks!

~Christy

Kindergarten IEP

To finally update you on Kindergarten...

Harlie will start in September.  Unfortunately, she will change schools from where she is now.  I'm a little bummed.

Where she is now:

• Is the smallest school in the county.
• Holds the county's talented and gifted program.
• The students are used to seeing hearing impaired and special education students.
• The teachers are used to having sign language interpreters/instructional aides in their class.
• Since the school is smaller, it is easier for Harlie to walk around.
• The principal and the staff already know her and she knows them.

But they are starting a feeder pattern for special needs kids.  The county is trying to keep the kids that don't go to their home school (the one they would be zoned for if they didn't have special needs) together as they move up in schools, which is great.  But for some reason this means they have to make some changes and they decided to move the Hearing Impaired Program to a different school.

I'm sure it will be fine.  It's just more change.  And it's change that I thought I didn't have to deal with.  And it's a bigger school, with more students.  I can't help but think the more students the easier for the hearing impaired kids to be drowned out and lost.

It is closer to our home.  And I know a few moms of kids who go there.  So, I guess that's good.

Anyway, she will go full days - 7:50am to 2:00pm.  She will ride the bus and her nurse will go with her.

She'll be in a typical class and she will have her nurse, the teacher and an interpreter/instructional aide with her.  Crazy.  It feels so weird to think that she requires that much support.  She will also have 90 minutes during each day with a hearing impaired teacher.  And she will get some speech therapy, too.  Some of that time will be in the class and some out of the class.

You might be wondering why we are sending our four year old child with special needs to Kindergarten when it is so clearly the trend to hold kids back when their birthdays are even close to the cut-off.

The cut-off here is that they have to be five by September 30th.  And with her birthday being September 25th - she barely makes it.  Our thinking is that since she's been in a preschool class for the developmentally delayed - she has not had "normal" peer modeling.  All the kids in her class have their needs and wants met without having to communicate them.  And while there is some structure, each child in her class has a different capability level - so the structure is not as it is in a typical class.

The educators that have been working with her believe that she is capable of doing a lot more than she does.  And they feel she has the academic knowledge necessary to start this fall.

We've certainly discussed this at length.  And really it boils down to:

Do we send her to kindergarten despite her age and developmental delays?
or
Do we keep her in the preschool education for the developmentally delayed class for another year?

Here's what we were thinking:

1) We can always change our mind and pull her out if kindergarten turns out to be not the best decision.

2) We are doing this with the expectation for her to repeat kindergarten, so her age isn't really that much of an issue.  Even though she might be academically ready (knows how to count, knows the alphabet, knows her colors and can write her own name, etc.) there is a lot she doesn't know - socially.  She has a lot to learn and going through it twice sounds like the best option.

3) Staying where she is now, is definitely, without a doubt, NOT the best decision.  She's learned all she can in that class.  And she is ready to learn more.

4) I really like, and trust, her teachers.  They really care about her and work very hard to bring out the best of her during school.  And they believe that this is the best way to go.  And Tom and I think it's worth trying, at least.  Let's see what she can do when the bar is raised.  I can tell you that I've learned that parents underestimate their children's abilities a lot more than they realize.  I don't want to do that to Harlie.  She's already amazed us in so many ways.  Let's see what she can do.

My major concern with starting her in a typical class is how her classmates are going to view her.  Will she notice that they are staring at her?  Will she start to wonder why?  And then will she start to view herself the way they do?  Because I do NOT want that to happen any sooner than possible.  That is one thing I would delay forever if I could.  She still smiles at herself in the mirror and doesn't seem to be aware at all of her differences.

So, her hearing impaired teacher had a great idea of putting together a Harlie book.  It will be a book introducing her, and explaining in simple terms why she has a trach, why she doesn't talk, why her eye is the way it is, why she has just one ear, what her suction machine is for, etc.  The book will have photos and will be very kid (and parent) friendly.  We're thinking if the kids understand more of what's going on with her they will be more comfortable accepting her for who she is.

We originally thought of just introducing her to the class and explaining things, turning on the suction machine, etc.  But, then they might go home and try to talk about her and their parents would have no idea what they are talking about.  So, this way, we can educate both the kids and the parents.  And hopefully, the parents will be good about setting a good example for their kids.

We also decided to put her in summer school with the county.  She will have the same teacher she has now, which is great.  Summer school for her current class is held at a different school.  And it is just more than a mile away (still not our home school).  This is awesome because I was not going to put her on the bus this summer.  For one, it is way too hot - especially with her back brace.  And two, I don't want her getting all jostled around on the bus.  I don't think that would be good for her back.  So we are super lucky that her class will be so close!

So, that's about it for kindergarten.  I am going to her school this week to meet the principal and register her.  I think that she is going to show me around some.

Exciting stuff.  Big changes.  Big challenges.  And hopefully, Big Successes are ahead.

There's so much more to tell you.  But this has gotten long enough.   I will post more as soon as I can.

Thanks so much for reading!
~Christy