Yes, we went to Emma’s school yesterday.  It was an impromptu meet, so I didn’t get any pictures.  But I definitely will on her first day.  Promise.  She was super-excited about being there.  However, when I showed the staff the bathroom “situation”, she got pretty agitated.  She didn’t understand that I wanted to show them how I pick her up and put her on the potty, and that I wasn’t forcing her to go potty.  They just needed to see how I picked her up.  It kind of went downhill from there, especially after seeing the gymnasium.  She just wanted to go run around.  In the end, we left with “you bully, you’re busted, you’re getting a spanking, etc.”  Not the greatest first impression.  Fortunately it’s not like they’ve never seen this behavior before.  But still.

On Wednesday, I will take Mason to his open house and to meet his teacher.  He’s cautiously excited about Kindergarten on Thursday.  However, he wants no part of the bus ride.  I’ve gotten a few suggestions on how to handle the bus situation.  I definitely want him to ride it.  We have the ability, we’re going to use it!  And, plus, it’s fun.  Eventually.  I think what we’ll try come Thursday morning, is to put him on the bus (hopefully not kicking and screaming) and follow him to school.  And we’ll meet him at school to get all the pictures my heart desires.  What would you do in my situation?  Perhaps let him get 2 days of KG under the belt then have him ride the bus Monday?  I’m up for any and all suggestions!  I don’t want him to fear it, but he often goes into new situations very nervous and anxious.  And then he gets there and says “hey, this wasn’t so bad!”  The bus will be the same thing.

Okay, let me have them!  I want your suggestions!

To say that we’ve returned back to “normal”, would be inaccurate.  Upon my return, I was hoping for only the jetlag to be an issue.  Emma’s behavior, however, has been the biggest issue this week.  I wasn’t sure if the medication stopped working.  I didn’t know if she was adjusting to me being back home (she has a hard time adjusting to people coming and going, least of all Mom).  I didn’t know if it was thoughts of her upcoming surgery.  Brett and I sat her down one night on the tail end of a huge temper tantrum and the truth came out.  Emma is scared about her surgery and hospital stay.  <heart breaking>  We talked with her and told her it was okay to be afraid, but that mom and dad would be with her the whole time.  She’d get a brand new room in the new tower.  I was able to get online and show her pictures.  And I told her that on Friday when we went down to the hospital for pro-op blood work, that we could go see the new room she’d be in and the playroom.  We knew she’d be on the 8th floor.

Friday came, and I took on the task of bringing her down for the routine blood draw.  She has been getting so good at these that the last few times she hasn’t even cried.  Because this time it was at the hospital, she had the worst tantrum getting it done.  It was reminiscent of the very first time she was in the hospital and she was 2 and scared.  It took 2 nurses to do the draw, a nurse, me, and child life holding her down.  And they had to do it twice because she still moved too much the first time.  The thing is, though, that the minute people leave her alone, she’s fine.  She leaves while waving good bye and saying thank you.  Amanda, from Child Life, walked us up to the 8th floor and we got to see a new room and the playroom that Emma would play in.  Emma was super-excited to see these two new places.  With Emma, it’s all about her knowing what will happen next.  Where she will go.  This is very typical behavior for kids with her condition, as for many other kids, especially ASD.  Now that she knew, we went down to the brand new cafeteria and got ice cream.  The problem was that she actually didn’t want to leave the hospital.  She thought she was going to be staying there.  That’s another issue we deal with…how far in advance do we deliver bad news?  She perseverates.

The rest of the weekend has been a roller coaster of emotions for her.  I’m just taking it with a grain of salt (easier said than done) and giving her lots of hugs and encouragement.  I also was able to print out a picture of the new hospital room.  As I type, she’s in bed taking a snooze with the picture right in front of her.  She’ll probably take that picture with her to the hospital, knowing my girl.  It’s just one way for her to have a sense of control in a situation where she really won’t have much.

To top it off, we finally have Emma’s placement meeting tomorrow afternoon.  Yes, tomorrow afternoon, the day before Emma’s big surgery.  Brett and I would much rather be spending time with the kids instead of having to prove why Emma belongs in a different setting.  And I will say as much.  I’m so frustrated with the whole situation that I have a few key points I will be making tomorrow.  While I’d like to go ape-shit on them, I will retain composure and be very firm in stating our case.  Thank GOD for our advocate, though.

I promise to keep you all posted tomorrow evening after the meeting!  And then I’ll post nightly (and maybe even from the hospital) during Emma’s stay.  We’d love any prayers and positive thoughts sent our way, especially for Emma.

I didn’t give shout outs to the amazing friends I do have!  And they know who they are!  They are seemingly by my side even when I’m doing a crappy job at returning calls/texts/emails.  Simply texting to see how I am brightens my day! I so appreciate their support.  They might tell me straight out they don’t understand, and that’s okay.  But they’ll stick with me through thick and thin.  Love. There’s the next level of understanding and compassion when you truly connect with a person who has a child with special needs.  With those friends, you never have to clarify or explain.  They seem to just “get it”.

On another note, quick question for parents of kids with special needs.  Of the many specialists Emma sees, a psychiatrist is one of them.  This is mainly because when she got diagnosed with ADHD (without the H), the neurologist thought it would be better for a psychiatrist to manage those medications, instead of the neurologist.  Anyway, it seems that her behavioral meds have just. stopped. working.  Focus isn’t there, and anxiety certainly is back.  Has this happened to anyone else?  When the meds just stop working?  So on Thursday we head back to the psych to see what else we can try.  I have some suggestions of medications that have worked well on other kiddos.  Basically, at this point, Emma seems to be regressing socially.  Her ability to ignore outside stimulus is zilch.  She can’t do “too much” in a day right now.  For example, I took the kids shopping with my mother in law and myself.  Then we met up with the men for dinner.  Well Emma had a fit at the table.  We almost took her out of the restaurant.  I wouldn’t be as nervous if this had always happened.  But she’s been on a good streak for awhile.  I think the stress of the last month of school may have taken a bigger toll on her then we thought.  I’ll keep you posted.

Lastly, thanks again to everyone who visited yesterday!  I was just under 500 hits…a definite record for me!  I hope you liked what you read and that you’ll come back and visit soon!  You can also “like” Jumping Waves on Facebook here.  And I do need to post (pictures at least) of Mason.  I don’t want the new readers to think I only have 1 child!  Emma has a super-cute little brother.

Have a great weekend, everyone!

Emma and Mason hanging out on a big ol hovercraft in Oceanside.

Not only did we have concrete facts to show that Emma wasn’t progressing, we had her anxiety about school as well.  And on top of that, I witnessed lots of “little things” that just added up and created one very unhappy Mama.  Before I get into those, here’s some background.  Last year, in Kindergarten, Emma had a wonderful aide that she shared with another student who had a visual impairment.  Things were great.  She was in a classroom that was highly structured, she had 2 amazing teachers, and 1 amazing para (aide) who was able to attend to her inability to focus.  This past year, for first grade, we were super lucky to have this wonderful para back.  Little did I know, however, they piled 2 more kids onto her plate.  So Emma was now sharing this para with 3 other students with varying delays and disabilities.  Not only was this not fair to Emma (of course, my first concern), but this wasn’t fair to the para or the other 3 students.  I’m not sure of anyone who would be able to attend to these girls’ needs in the general ed setting.  We were setting ourselves up for failure.  I voiced my concerns.  Many times.  On top of that, Emma was now placed in a classroom that was less structured, less routine.  My fault in that was that I didn’t go into these classrooms before hand to observe the setting.  And I should have.  (Lesson 1, my friends!!  Learn from my mistakes!)

We had meetings to discuss Emma’s lack of progress (their words, not mine) and her anxiety.  We decided to put her into a classroom that was more “self-contained”.  Well, I should’ve thought more about that as well.  This special ed teacher had 32 kids on her plate (granted, not in the classroom at the same time).  She had paras floating in and out of the room.  As well as these kids.  There was no routine or structure in there.  While there were fewer kids, there were people coming in and out of the room.  This wasn’t a good situation for Emma either.  Her happiness declined.  Temper tantrums increased. This clearly wasn’t working out.  Again, I tried voicing my concerns.  They fell on deaf ears.  Or ears that didn’t want to do anything about it.

Enter “the little things”.  The last 2 months of school were just one big hill moving downward.  Quickly.

Issue 1: On a day when Emma’s para wasn’t there, there was no one to walk the kids out to the parent pick up line.  Emma found me immediately.  The little girl with the visual impairment was led out to the parent pick up line by another little girl with severe mental delays.  How is this right?  Fortunately I took over and led the VI girl to her mom, who doesn’t speak English, by the way.  How did this responsibility fall on the girls?  If the para had to leave early, why wasn’t there someone else to escort them out?  It’s in these girls IEP documents (legal documents, by the way) that they have para support during transitional times.  On top of that, the general ed teacher was right inside the gate, and led the other students to the bus line.  And another aide walked right by them.  When I asked this aide where an adult was, she just shrugged and hurried right past me.  I brought this concern to the attention of the principal and the special ed teacher.  The principal wasn’t happy.  The special ed teacher told me that the aide I spoke with had to hurry to another job.  I’m sorry…what?  Wouldn’t most people have a moral obligation to help a student who is blind?  Let alone a para who works with them should have that moral obligation.

Issue 2: I have the pleasure to supervise my students at lunch at the same time Emma eats lunch.  During lunch, again, Emma (and the 3 little girls) have para support. The para, at this time, helps them buy their hot lunch, makes sure they get utensils, and helps them sit down.  The para also makes sure that they can open straws or forks (something that’s difficult for Emma with her low muscle tone).  And she also makes sure they eat a little something! During this lunch period, their wonderful para gets relieved by another para so she can eat lunch.  The second para, by the way, is the same person who also rushed by me after school in Issue 1.  Well, this para made sure she helped Emma clean her plate.  I saw her (twice) eat food off of Emma’s plate.  This is wrong on so many different levels.  First, no where in Emma’s IEP does it say that she is to be fed.  She’s very able to feed herself.  She just needs redirection, sometimes.  Also, as an aide, I don’t want to touch my students food.  Ew.  I don’t know where their hands have been.  She teases Emma with a grape, then pops it into her own mouth. Not 5 minutes later, I see this para blowing her nose into a napkin.  Okay, when I am watching over my students, I do everything I can NOT to touch their food.  And I keep a bottle of hand sanitizer around my neck.  Not quite believing what I saw, I put the other aides I work with on alert.  Finally, someone else sees what I see.  Again, I wrote an email to the principal to let him know of what I saw.

Am I in the twilight zone? <fade in music>

Issue 3: On a day when Emma’s regular para wasn’t in school, she had no support during the first part of lunch.  By the time the second para came in to help, Emma had packed her lunchbox up.  The para didn’t ask to see what she ate or look inside (perhaps the para wasn’t hungry that day?).  When I got home, this is what I found:

This is just another reason why Emma needs para support at lunch.  She didn’t get her open yogurt to the trash, nor her open and full juice box.  She didn’t even touch her peanut butter sandwich or her cheese stick, the “important” things (containing the most protein).  Immediately I took this picture and attached it to a nice email I sent to the special education teacher.  Want to read that email?  Okay!

Mrs. Special Ed Teacher,
I attached a picture to this email that shows Emma’s lunch box as I found it yesterday after school.  It emphasizes the fact that not only does she NEED para support at lunch time, but it is in her IEP.
I understand if there isn’t a sub to pick up her normal Para’s position.  You can’t force someone to take a sub job.  HOWEVER, there are plenty of para’s on campus, ESPECIALLY the DPS paras that are on lunch time during Emma’s lunch.  One of them could very easily provide assistance and supervision to Emma and the 3 other girls in Ms. Para’s care.  This is the school’s responsibility to find a para to fill in, per her IEP.
I wanted to bring this to your attention.
Sincerely,
Brett and Jessica

Can you tell I’m getting worked up just typing this out?  Turns out this is a great release for me!  I have more.  But as not to bore you (or make you equally as frustrated as I am), I will save it for tomorrow.

Keep this as food for thought…no pun intended.

What would you have done in my situation?  I’m very curious!  Please leave comments!

…to keep insanely busy, and…

to get sick

to have a leak in your shower UPSTAIRS

to have one child going on his first trip without you

to have the other child be admitted into the hospital for 1 or 2 nights

That’s what we’re doing tomorrow…taking Emma to Phoenix Children’s Hospital.  She will be in their epilepsy monitoring unit for 24-48 hours.  Being in that unit gets her constant EEG monitoring to watch her seizures.  Basically we want to know if the seizures have increased or decreased.  Or if they’re staying the same.  Her anxiety has been a little higher this time around.  I think it’s because she’s older and she gets that she’s going to be staying in the hospital.  Even though we’ve shown her pictures from her last EEG visit, she’s still pretty nervous.  I have new things for her to do, though, and visitors lined up.

This weekend we kept her busy while Mason went with Grandma to Napa, CA, for his Great Great Aunt Dottie’s 90th birthday!  What a treat for him!  Around here we’ve gone to the park a bunch to ride bikes and play soccer and swing on swings.  We’ve gotten hair cuts (“we” as in Mommy and Emma), went to see Tangled, which is A-Dorable!  We tried a new restaurant. We watched Frosty The Snowman.  We’ve done as much as we could do to keep her mind occupied.  I think it worked for the most part.

Anyway, before this gets too long winded, please keep Emma in your thoughts and prayers tomorrow as she gets checked into PCH.  This is very routine and “easy peasy lemon squeezy” (as she says), but she’s nervous.  And I hate coming home to an empty house at night.  Especially when one of my babies is in the hospital.

Emma getting her EEG in the spring of 2009

I promise to keep you posted!

checking out the view

If you read my posts from yesterday and Friday, you know that we went to the Grand Canyon this past weekend.  We had a great time.  I won’t lie, there were some bumps in the road.  Those bumps were called zoloft and concerta, 2 new medications Emma was starting.  The big debate between Brett and I (actually not a debate, more like a discussion or a decision) was whether to start it before or after our trip.  We didn’t know how our trip to the Grand Canyon would go.  And we also had reservations at El Tovar to end the day.  It was going to be a long day, and the kids would be with us, of course.

We decided to try the medication on Friday.  We decided that it couldn’t hurt.  There was already a good chance her day would be off since there was no school on Thursday.  For the majority of Friday, she was dazed and a bit lethargic.  I learned that is called the seratonin effect.  She was so out of it that she spent the majority of the day in my classroom and then I took her home when I got off of work (talk about the benefit of working at their school!).

Fast forward to Saturday.  She was having mood swings.  Lots of them.  They made me very nervous.  The fear of taking an uncontrollable child to the Grand Canyon (aka the biggest hole in the earth) was very present.  She was to hold an adult’s hand at all times.  I didn’t want her close to the edge at all.  To sum it up, we made 4 stops on this tour that my brother took us on.  Her behavior was erratic during 2 of the 4 stops.  On the way to the last one, we had to bribe her to get some protein in her…cheese and ham slices.  It worked, spiked her blood sugar up, and she was golden.  We were able to watch the sunset in peace and quiet (oh yeah, except for the 4 year old who was whining).  Dinner at El Tovar went great.  No issues with her behavior, no issues with her eating.  She ate like a champ and sat quietly while the rest of us finished.  Not bad for a kid who’s used to eating dinner by 6:00 every night.

Okay, so here’s the big question: How do you enjoy the moment when your thoughts, concerns, anxieties are with your child?  Is it possible to focus on your children while you enjoy the day and the moment?  I don’t feel like I was fully able to savor the sunset at the Grand Canyon because I was a little nervous that my kids might run over the edge.  Just a little.   Have you ever been in a situation like this?  Perhaps you had your kids at a wedding.  Or on a special trip.  The circumstances are numerous.

How would you, or how did you handle it?