In a Happy Place

Just a real quick post to let you know that things are so good around here!  Everyone is healthy and I can't tell you how good that feels!  Harlie has been to school for nine days in a row.  And assuming that she goes in the morning, it will be two full weeks of attendance!  Woohoo!!!  What a difference being healthy makes!  And when I see her healthy, I feel SO awful that I pushed her so hard when she wasn't.  It is truly amazing what she can do when she feels bad (or has to work so hard to breathe) and even I sometimes fail to see that.  Must remember to think about that next time!

I haven't been able to tell you - but we decided to put her on ADD medication.  She had a lot of evaluations for her IEP (which we had a while ago) and in every evaluation from several teachers, it was apparent that her inability to sit still, stay focused on her work for longer than two minutes, and her distractions to something like the carpet, or a marker, were becoming a huge problem.  Each teacher made a note that they did not believe that the results of the tests were accurate or indicative of what she actually knew.  She had to be redirected so many times.  All of this I knew, really.  But, when it starts to get in the way of your education and ability to learn - to ignore it would be irresponsible of us.  She has enough challenges in her path.  And we are doing everything we can to help her overcome them.  If she couldn't see the wipe board at the front of the class, we wouldn't think twice about getting her glasses.

This is the same thing.  It helps her see things more clearly.  It also reminds me of when she was a baby.  She didn't sit up unassisted until she was more than one year old.  But, for months prior to her first birthday, she had a very hard time breathing.  She was focusing all her attention on breathing - so learning to sit up wasn't an option.  It wasn't until after she had her two lung lobes removed and she could breathe easier, that she could then focus on her environment and learn to sit up.

Anyway, I got the forms and had several of her teachers complete them.  And I also provided her IEP evals.  I felt really confident that trying the medication was the right thing to do.  And let me tell you - WOW!  What a difference!  She is doing GREAT!  She can actually focus on her work and she is ENJOYING learning!  It is so wonderful!  I am so thankful!

I have so much more to tell you about... but I am still struggling to find the time to sit and concentrate to blog.  I will try to squeeze in some time tomorrow (Friday).

Thank you, as always, for your continued support!!  It is so appreciated!!

Much love,
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

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

Murphy Update

So, I have not told you about Murphy's doctor's appointment, like two months ago.  Since he's on medication for ADD, he has to be seen regularly by his pediatrician.  As you may already know, the medication for ADD or ADHD is a stimulant, and the main side effect is a major loss of appetite.  This is no joke.  Getting him to eat while on meds is a struggle.  And it was really obvious when they told me that he lost TWO pounds since January!!!

And, at the time, he was really struggling in swim practice.  Honestly, he was eating so little, that I wondered if his body had enough energy to even make it across the pool!

So, his doc and I discussed things and we decided to take him off his meds for the summer.  By the very next day he was eating a considerable amount more than before.  And I heard the words I had not heard in over six months, "I'm hungry, Mommy."  And the very next week he made it across the pool without touching the rope.

Hopefully, he will gain his weight back, and then some, by the start of school (right after Labor Day).  Then, I'm guessing we'll have to put him back on his meds.

Oh, and I have done something I thought I would never be able to do - I have already FINISHED back to school shopping!  EARLY!!!  This year, all three kids had a supply list.  So many supplies, so little time.  But, I am ALL DONE!  Woohoo!

Okay, that's it for tonight.  I am falling asleep as I type.  Goodnight!

Thanks,
Christy

Murphy Update

So, I never updated you on Murphy.  I've had a lot of people ask me privately about it.  And I think my experience might help or at least educate some.  So, here's what happened:

Tom and I got some questionnaires from Murphy's pediatrician.  We had to fill out some (separately) and his first grade teacher had to fill out a different one.

While that was happening the school conducted some tests.  He met with a bunch of different people.  This was in October (I think) so my memory isn't great.  But one of them tested his comprehension with reading.  She said that during the test he would read a sentence and then stop to tell her a story that the sentence reminded him of.  He did that throughout the whole test and his score proved he was very distracted.

So, we turned our tests in to his pediatrician and then Tom and I went in to meet with him about the results.

The results were very obvious.  He has ADD - Attention Deficit Disorder.  This is different than ADHD - Attention Deficit Hyperactivity Disorder.  He is definitely NOT hyperactive, that's for sure!

We certainly discussed lots of ways to help him focus at school.  But after a long discussion with his pediatrician, we believed that trying medication was the best way to go for him.  Tom struggled with this more than I, so it was not something we rushed into.

I think one of the major obstacles for parents in this situation is accepting that your child needs a daily medication.  It sounds scarier than it is (in my opinion).  For the past four years we have given many medications to Harlie.  One medication was Reglan (the one that has the commercial about the side effect called Tardive Dyskinesia).  I am happy to report that she is no longer on that one (with no side effects).  With every medication you have to weigh the risks vs. benefits.  And she's been on a heart medication for a while now.  And she will stay on that for a long time.  And she's still on reflux meds.  Not to mention what she's been on in the past (lots).

My point is that I'm used to giving meds to my kid.  I've accepted that meds are needed.  And quite frankly, I'm thankful that meds are available.  And if his doctor says he believes Murphy will greatly benefit from the medication, I felt like we had to seriously consider it.

Our thinking was that the side effects of the meds (in our case a loss of appetite and difficulty sleeping) was not as bad as doing nothing at all.  Without medication, he would struggle - and struggle a lot.  Here were his problems:

• He felt lost in class.  This kills self esteem and confidence and it can take a long time to recover once this happens.  
• He wasn't participating in class activities.  
• He wasn't playing with his peers.
• He couldn't remember his classmates names.
• He scored very low in the PALS testing.  His score was not indicative of what he knows, he just couldn't focus during the test.  Think of how this alone could affect his schooling and his ability to succeed! 
• He couldn't complete class assignments.  
• None of his issues were behavior related.  He didn't act up in class.  He didn't call attention to himself.  Every day after school during our walk home, he would tell me he had "another bad day" but that "I tried my best."  It killed me.  It was very obvious that he was trying and that he was disappointed in himself at the end of the day.
• He just couldn't focus for the length of time necessary to learn. Period.

The side effects of all of those things are WAY worse than the side effects of medication.  So, we agreed to try it.

In ONE day - he was a completely different student.  ONE DAY!!!!  Instead of not completing his assignments, he was the first to finish them!  And then he would help his classmates!  He started making friends and getting to know his classmates.  He would complete his homework in a fraction of the time he did before - and with way less instruction from me!

The medication was life changing.  No doubt about it.  He was prescribed the lowest dose.    And we hardly notice any side effects at all.  He definitely eats and sleeps more when he doesn't take his medication.  But, it's not an issue when he does take it, either.

Our follow-up Child Study meeting was last week and it went great.  His teacher said she can't wait to test him in the spring.  It is the same testing that was done prior to him going on medication - and put him at a pre-k level!.

The bottom line is that he is a happier kid.  And now he likes school.  And considering he's got a lot more school to go - that's a good thing.

Now you know!
~Christy

ADD????

These past few weeks, my thoughts have been consumed with Murphy and his struggles in first grade.  His teacher and I have spoken numerous times - in person, over the phone and through e-mail.  And last week Tom and I had a conference with her.

I want to stress that he's not a bad kid.  He's not acting up, being disruptive or disrespectful.  He just can't seem to pay attention or listen enough to be able to keep up with the class.  And as his teacher says, he's just "some place else" a lot of the times.  And while he might know how to spell all the words studied that week, if he doesn't hear her call them out come test time, he doesn't write them down.  So she can't see that he knows how to spell them, and clearly, his grades will be affected.  

We've put some things into place to help.  Whatever work he doesn't complete in class, she sends home so I can make him do it before he can play.  She has 5th grade aides that come in to assist the students as needed.  She moved his seat to be right next to her so she could keep an eye on him and help him along as much as possible.  And Tom has started to walk him into his class so he can help Murphy with the "check-in procedure."  Getting off on the right start seems to help Murphy for the rest of the day.  I think the numerous steps in the check-in process just overwhelm him and leave him beginning the day already feeling behind.  What a horrible way for a six-year old to feel!!!

We've also made some changes at home.  We started a point system with goals that focus on staying on task (without being reminded 10 times), following daily/nightly routines without being prompted and
successfully completing several-step instructions (without being reminded).  I'm not so sure a point system will work for him.  A friend told me about a similar system she has in her house, but she makes it more visual than points on a piece of paper.  So, I might have to try that route soon.  I just don't think he gets that excited about tally marks.

Anyway, after many conversations with numerous people, we completed some paperwork to see if he has Attention Deficit Disorder (ADD).  I am not linking ADD to any website because I have - purposefully - not read up on it.  (I learned that tip over four years ago.)  We - just Tom and I - have an appointment with Murphy's pediatrician tomorrow to go over the results.  Then on Friday we have a Child Study meeting at his school.  Here is a definition of Child Study Meeting that I found:

The purpose of the child study meeting is to identify barriers to the learning process, to target specific issues, identify base-line data needed and to then propose strategies which will be attempted as interventions.

I don't know exactly how accurate that definition is, but it sounds close enough to me.  There will be a lot of different people in the meeting, each providing their information and thoughts.  And then the group decides on what, if anything, needs to be done.

So, we'll see what the next couple of days brings.  This has been weighing so heavy on our minds in the Holton household.  I just hate to think of how "lost" he feels during the day.  And the chain reaction of isolation that it has already started to cause.  That is so not our son.  And I can't stand to see him go down this road.  So, hopefully this meeting will be good.  Maybe they can offer some plan to help him.  IF he's ADD, he's certainly not the only one in school.  So, I'm sure they have some things in place to help.

Anyone want to share any ADD experiences?  Got any advice/tips for me?

Thanks!
~Christy