Monday, September 29, 2008

Deadlines, Sinus infections and Lunch--Oh My!

No news is mostly good news. The lack of updates can be blamed on my lack of prior planning and the convergence of three client projects. And no huge crises to report.

Finn went six whole days at school without crying and then had a little meltdown last Thursday. The principal took him for a stroll around school and Finn said he missed me. The principal said it was OK--she misses her mom, too, because she lives in Texas. So crying still seems to occur when there is some sort of transition going on and Finn feels unnerved by it and doesn't really know what's coming next. Basically, if things don't go totally according to whatever plan is in his little head, it rocks his world. The same old same old is a good thing when you're Finn.

Tomorrow he has his second occupational therapy session and I'm actually looking forward to letting him come home in the middle of the day. He's battling a sinus infection and so next week we'll be meeting with a pediatric ENT to see what can be done to help Finn's poor sinuses which have just been battered by 3 1/2 years of chemo. I tried mightily to keep the sinus infection from taking root, but no luck. You know I have a huge dislike for antibiotics, but after hearing him struggle to breathe and not getting good sleep, I realized our options were limited.

Today I went to school to have lunch with the boys. It was interesting to note that they are trying a new "system" during kindergarten lunch. The kids now sit with their class and each class is assigned a different color. When it is time to finish eating and throw away your trash, your table can come up when the color card for your table is held up by the lunch monitor. The lunchroom was somewhat quieter today. . .until for some bizarre reason they kids were all excused to go outside at the same time. The stampede was mind boggling. So Finn has a little bit of angst about the new "system"--it's another thing to get used to.

When I turned up at Declan's lunch, he seemed happy to see me, but appeared more interested in talking to his friends. I was definitely the 6th wheel at the table! Ah well--it's funny to sit there and hear them tell their nonsensical jokes and crack each other up.

And finally, I have been trying to upload photos of Ohio/Niagara Falls/Michigan, and Kodak Gallery is vexing me. I hate being vexed. I'm going to go try it again and hopefully I can report back with a successful upload. Because if I try it again and it doesn't work. . .I'm going to. . .well, heck, I don't really have a vengence plan for Kodak Gallery, but I'll think of something.

Wednesday, September 24, 2008

It's 9 o'clock and all's well. . .

. . .except that Finn just got out of bed for about the third time to tell me that the fifth graders are coming to read with his class tomorrow. Great excitement. This right after he told me school is too long. I recall feeling the same way in my youth. Now I find that school really isn't long enough, quite frankly. Or perhaps I have signed up to do a few too many things.

The Swinging Before School strategy seems to be holding. Our plan is to keep it up until the snow flies. Which actually could be pretty soon.

Finn had his first occupational therapy session yesterday and it was pretty cool to watch. Megan, Finn's occupational therapist, started by swinging him on a portable swing she hung in the doorway of our mud room. It was a basic swing like you'd see at a park (except it had a nylon seat as opposed to a rubber one. Or are they plastic?). Then she switched the swing to a big net, which Finn though was hilarious. She wrapped him in a blanket to act as strong pressure, which is soothing to him, and then swung him like that. These activities were to calm him before therapy. Still using the net she had him get on his stomach and swing. His arms were out and he had to hold his head up and catch a ball--good core strengthening activity. I could use some of that myself.

Over the course of the session, it was interesting to watch how Finn went from the calm activities, to ones that got him more stimulated from a sensory standpoint. The one that got him most excited was when he got to feel around for plastic animals in a giant bin of macaroni. After several more activities, Megan calmed him back down again with more swinging and some quiet music. Again, the science behind all of this is mind boggling. His next session is next Tuesday morning. We're waiting for a permanent time slot as other kids finish up their therapy, but we're grateful for what we can get right now.

Declan went back to school yesterday. I'm still trying to get caught up. Some day. Perhaps instead of sitting here watching Karate Kid II I should be working. I used to think Ralph Macchio was such a hottie. He's actually kind of wimpy in these movies. And wasn't he about 43 when he made them? Then when he hit puberty at 46, they had to stop. And that's why there are only nine Karate Kid movies instead of 10. Hormones.

Monday, September 22, 2008

I Hope it Lasts!

I think our OT might be a Super Genius. Remember I wrote about her idea to take Finn to the playground and swing him before school? Holy cow. It worked! I hadn't heard back from the school principal to see if we'd be allowed to use the school swings, so we walked to the pocket park near our house this morning. Granted, it was actually away from school, but it was actually nice because there weren't any kids there. They were all on their way to school!

On the way to the park, Finn talked about not wanting to go to school. We got to the swings. . .and within two minutes of starting to swing, his whole body posture changed. He relaxed, started looking around and was commenting on things going on in the neighborhood. I couldn't believe it. He chattered on as if he hadn't just been complaining minutes before.

We got 10 good minutes of swinging in and at the appointed time, he hopped off and we headed towards school. Only once on the walk to school did he comment, "I'll miss you at school." Other than that, he chattered on the way to school as if was a kid without a care in the world. I was holding my breath, quite frankly, but the good spirits seemed to hold. In line, he held my hand, but wasn't tearful--the first morning I felt like this was the case.

Really, the difference was astounding. Seeing that actual, physical change come over him was like. . .heck, I can't even think how to describe it. I wish I understood more about the science of it all, but then again, I didn't do very well in science and probably wouldn't really get it anyway. I'm just glad it worked.

In the end, we do have permission to use the school swings in the morning, but I think the park might be more our speed. We'll just have to leave a little earlier in the morning. When the weather gets colder, Eamonn said he'll hang a swing in the basement, but a mini-trampoline, rocking chair, or a yoga ball can accomplish the same things. Very cool.

On the uncool side of things, Declan was home sick today. I can't even remember the last time these two were sick and now both in a two week period. I hope this isn't a sign of things to come this winter.

Friday, September 19, 2008

Made it to the Weekend

I, for one, am so happy that Friday is here. Usually, being self-employed, I don't really care if it's the weekend or a weekday--work happens when it needs to happen regardless of the day of week. But, this week is different. I feel like I worked emotionally all week and I'm exhausted! However, I can't explain why the only thing I really got done was that IFRS article and that was just by the skin of my teeth. I wonder if I'll ever stop procrastinating? Probably not.

At any rate,this was Finn's first full week of school and he was exhausted, too. Finn has always just announced, "I'm ready for bed," when he was tired. Even when he was just new to walking, if we hadn't put him in bed yet and he was ready to go, he'd walk to his crib and stand there. He's a boy who likes his bed. Until 6am. And then good luck keeping him in there--he's up and rarin' to go. He is under strict orders to stay in bed until 7am tomorrow.

We'll see.

I want to see if we can go 48 hours without talking about school. I talked to Finn's OT today and we're working on some plans to continue to ease the morning transition to school. One suggestion is to take Finn to the school playground first and swing him for about 5 minutes. The front and back motion can organize his nervous system for up to 8 hours following the activity. Isn't that amazing that we (not "me" "we", I mean "science" "we") can know things like this about our bodies. Anyway, the difficulty comes in because the kids aren't allowed to play on the playground before school. Seems kind of whack to me, but I've e-mailed the principal to see if we can get an exception. Why am I always asking for exceptions? I hate having to do that.

It's a sports-related weekend here--soccer game for Declan and a hockey clinic for both Eamonn and Declan. I think Finn and I will sleep. Actually we'll probably play trains.

At any rate, thanks to everyone for their support this week. Have a great weekend!

Another Step Forward

This morning's report: Another baby step forward. Finn mentioned that he did not want to go to school, but he wasn't tearful at drop off today. I didn't feel like he was teetering on the edge, which has unknotted my stomach a little.

Possibly helping the situation is that his little preschool friend, Olivia, had her own meltdown at school yesterday. I think it helped him to see that other people get upset and then can pull themselves together, recover and go on with their day. I suggested to Finn that maybe if Olivia, or anyone else for that matter, got upset, maybe he could help by giving them a hug and telling them it would be OK.

Some of you had suggested, and I had thought about this myself, that it might help to have a "buddy" assigned to Finn to keep watch over him. But I have quickly realized that kindergartners are notoriously fickle and it was probably unrealistic to ask any one kid to be the one to always be there for Finn. You know how they are--"Jack said he's not going to be my friend today. . .Carlos stepped on my foot and I don't like him anymore. . .Carter is my best friend today. . .Carlos is my best friend today. . ." I can't keep track of it. So my other thought was instead of having a buddy, it might pull Finn out of his own head to BE a buddy to someone when he sees they need help. Not that I wish Olivia a bad day or anything, but I'd be curious to see how he'd react if she needed help.

I now have five hours to complete my 1,800 word article. It's about half finished. Help.

Thursday, September 18, 2008

Another Day, Another Pokemon Pack

And another day closer to bankruptcy.

Yes, Finn made it through another day without crying. Once again, he was very, very proud. He high-fived Mr. Teacher who proclaimed it a Great Day.

I'm worried about two days off over the weekend. I think I've already mentioned this. But, as Hana, I have to repeat it to you ad nauseaum.

Tomorrow's goal? To earn a new book about Thomas the Tank Engine.

I can't take much more of the Pokemon. It sounds like the boys are talking in a foreign language when they talk about it. And they want to show me the cards over and over again.

Good night from Planet Pokemon. And thank you for your support.

Wednesday, September 17, 2008

Status Quo--which is OK

Today's drop off for Finn was much the same as yesterday. He was tearful, but not crying. We walked Declan to his class line first. I'm trying to time things sl that we are not standing outside saying goodbye for so long. I don't want to just put him in line and run off because many of the parents stand and wait with their kids. But I also don't want this big, prolonged goodbye. So I was hopign that by going to Declan's line first, we could avoid this. Those kindergerten teachers really wait until the bitter end to go in which is foiling my plan.

Ironically, I think once he gets there, he has a good time. Several of the aides made it a point to tell me they dropped in during the course of the day to see what he was doing and each time he was not crying and was engaged in what was going on. Mrs. Angel said he was a little worried at lunch, but ultimately he was fine and he ate most of his lunch, which I always consider a good sign.

My goals is just for each day to be a little better.

Pokemon Rules

Never again will I roll my eyes when the boys wave their Pokemon cards around, trading back and forth with a verve rivaled only by those who work on the floor of the New York Stock Exchange.

I hate to say it, but I think the bribery aspect was the number one thing that kept Finn focused on succeeding today. I would like to think otherwise, but alas, it would be untrue.

Now, it's not to say that I think it will be smooth sailing from here on out. While Finn was so proud of making it through the day without crying, AND the sticker he received from his teacher for a job well done, at bedtime (of course) the "I don't want to go to school" lament started. And he's definitely having trouble getting to sleep. In a way, I'm dreading the weekend because I'm afraid Monday will be like starting from scratch. But we'll cross that bridge when we come to it as Ma Ingalls liked to say. Or don't borrow trouble from tomorrow, today has enough of its own. Did Ma ever say that? That Ma--she was so wise.

Based on your e-mails to me and the posts in the guestbook, I'm guessing some of you are wondering my we aren't just yanking Finn out of his class and moving him to a new class. Or a new school for that matter! Last week when we met with Finn's OT and received the official evaluation report, one thing she made very clear was that change will be something that is difficult for Finn. And very disruptive. So while the situation has been very difficult (to say the least), we feel the need to attempt to stick it out to see if we can avoid causing Finn further disruption and confusion.

Academically, I don't have any concerns. I know that sounds like I think my kid is Wile E. Coyote, Super Genius, but one of the bonuses of spending so much time with me and then going into a very small private preschool is that Finn got a lot of one on one educational attention, even though it was a play-based preschool. The result was that he "tested" very high and he is well beyond where he should theoretically be at this point in his school life. No, our biggest concern remains the social issues. In his current class, not only is there a little girl who was at preschool with him last year, but two of his best little buddies are also in his class. And our next door neighbor who he spends a lot of time with, even if she is a girl and loves to wear pink, is also with him. He doesn't know anyone in Mrs. Angel's class at this point. So again, I know it sounds crazy, but while to our adult minds it sounds like making the switch to Mrs. Angel would be totally logical, it would likely be problematic for Finn. It's hard. We second guess ourselves all the time. Never fear--while we do want to support Finn's teacher, in the end, it's the lowest of our priorities. We've got bigger fish to fry right now.

And while all of this drama has been going on, I turn around and look at Declan who is absolutely blossoming. Is that weird to say about a boy? When we moved from Ohio, Declan really struggled. While I loved his first grade teacher, that whole year was tough. He went to four different schools in four years: preschool to kindergarten--two different schools in Ohio, then to Colorado for first grade where he attended a school where we were living temporarily, and then finally to our neighborhood school for second grade. This is the first time since he was 3 that he stayed at the same school for two years in a row. We were so lucky to have Mrs. V for second grade. I miss her, even though she's still there. There's something about those teachers who have 20+ years under their belts who are just so calming and wonderful. Ahhhh, it makes me happy just thinking about them.

This year it looks like we've scored again with Declan's teacher--Mrs. T. Back to School Night was last night and we were so pleased with everything we heard from her. And Declan really seems to LIKE school. Not once has he said he doesn't want to go. He comes home excited about what he learned that day. And he's spouting off random facts to the point that we've started calling him Mr. Britannica. However, maybe for the cyber-age we need to call him Mr. Wikipedia.

But that is the kind of school experience everyone wants for their kids. I am so happy it's happening for Declan and I can't wait for it to happen for Finn as well. I know it will.

For now we're back to the baby steps. It's 8:30pm and I'm already getting an anxious feeling in my stomach about tomorrow. I will have to pull myself together tomorrow and get things done no matter how the day goes. I have a work deadline on Friday and missing it isn't an option! I've never timed myself so I'm wondering how long it will take me to crank out an 1,800 word article on the bright side that will come from the convergence of International Financial Reporting Standards and U.S. Generally Accepted Accounting Principals. Thoughts on this? Anyone?

Amazing how fast that topic can put you to sleep.

Lunch Update

1:39pm: I just got an e-mail from Mrs. Librarian. No tears in the lunchroom today! His lunchroom angels were there for him all the way. And of course, as Mrs. Librarian pointed out, he couldn't stop talking about those Pokemon cards. One hour to go and then apparently we are headed for the toy store.

I realize that this is just the tip of the iceberg for him, but I just want him to have some success. Once. Just to get him going and he develops that feeling of security. I feel like it's such a small request.

I can't wait to debrief Finn on his day. . .more later. . .

A Quick Update

I feel like I should post a live blog. It would look something like this:

7:50am--Walked the boys to school. Declan is loving school and skipped ahead with a friend. Finn walked next to me dragging his Finn and lamenting how much he hates school.

7:55am--We discuss the merits of going to the toy store right after school--IMMEDIATELY after school--to get Pokemon cards and Finn rallies a little.

8:00am--He walks into school. Tears are there, but they are not falling. A step in the right direction. I hear a hysterical, "BYE, MOM!" as he disappears into the building. He is "armed" with a kissing hand in one pocket, a picture of all of us in the other. Baboo and his favorite train are in his backpack. In his lunch I put a special note and another picture of us.

8:05am--I wait outside for a few minutes until I'm sure he's in his classroom and won't see me. Then I head to the library because I help shelve books on Wednesday morning.

8:20am--I peer out to make sure Finn won't see when I get ready to leave. Instead, I see Declan who waves excitedly and then goes into the computer lab, happy as a clam.

8:25am--I'm leaving, but I can't resist. I ask one of the aides to go to Finn's class and see what's what. She readily agrees--she's cool like that.

8:27am--She returns and lets me know that the class is having circle time. Finn is in the circle and is raising his hand. No sign of tears.

8:30am--I return home. I pace around. I wash the breakfast dishes--practically a first this week that it hasn't had to wait until the end of the day because of all of the craziness around here. I still feel restless. I can't work. I surf the Internet and finally do some exercise. My work deadlines are looming. And yet, I do nothing.

In 7 minutes, Finn will in the lunchroom. I have several loving teachers and aides lined up on "Finn duty" so that we can see how he will do. I feel anxious for Finn because of the stress he may be feeling. I feel anxious for me because if this doesn't work, I know I will be embarking on a course of action that the school does not support or approve of and I may potentially be damaging my relationship with them. I am anxious, but I know I will do it. That makes me more anxious. I hate anxiety.

I'll let you know what happens. Hopefully I won't be blogging right after school and instead I'll be at the toy store.


On another note, please pray for our dear friends the Escoes--Kristie, Blaine, Brayden, Kellen and Kendrie. Read Kristie's latest post for more information.

Tuesday, September 16, 2008

The Courage of My Convictions

I was looking forward to posting tonight. I envisioned myself writing this enthusiastic update on how well our meeting went, that Finn had a better day today, and that I felt everything was on the upswing. I won't be writing an update like that.

I used to be a very negative person. Or maybe a worried person is a better description. For a long time, my sisters called me Hana--short for Chanukah--because they said I spent more time worrying than a Jewish grandmother (truly, not meant to offend anyone from the Jewish faith). And I have to say, it was true. I might even have been known to kvetch, as well.

I still spend an inordinate amount of time worrying about things which may or may not happen. But you can't go around worrying like that in front of your kids, so I try to be positive, give people the benefit of the doubt, and think that the best possible outcome might be the very first thing that happens.

I don't feel like that right now. Kvetch. Kvetch. Kvetch.

I woke up this morning feeling positive. I was looking forward to our meeting with Finn's teacher, the OT and the principal. Things started out well. We went through Finn's medical history, his social development (or lack thereof), his education to date (one year of preschool) and his experiences with sensory processing issues to date. Finn's OT went through a lengthy report she had prepared which walked the teacher through what SPD is and strategies for best helping Finn.

All through the meeting the teacher was nodding, agreeing, listening, discussing examples with the OT, etc. I was feeling really good.

And then at the end of the meeting, we stood up, shook hands all around, and he said, "But if you wouldn't come to lunch it would really help his separation issues." WHAT? I wondered if I'd heard him correctly. You mean we just spent 90 minutes going through all of this, helping you understand why this kid is behaving this way and you still don't see how me coming to lunch with him for the time being will help everyone in this room?

Perhaps I was the only one who took this comment that way though.


Eamonn and I walked outside with the OT went to meet Finn for lunch and observe the lunchroom. Eamonn's first words were something to the effect of, "Well, apparently the teacher didn't quite get what we were talking about in there."

And when I met with the OT after lunch, she made the same comment.

I am not crazy. I am not crazy. I am not crazy. It helps to remind myself of that sometimes.

When I was wrapping up my comments to the teacher and principal, I think I ended with something like, "Bottom line, a good portion of this kid's life has been pretty crappy. I want him to stop having a crappy life right now and if that means I need to come to lunch, then I'm coming to lunch." Was I not succint enough? I thought using the word crappy in a kindergarten setting was pretty succint, but perhaps not.

Tonight I had a lengthy conversation with another of the kindergarten teachers. We met at Bible study last year and I adore her. She is everything a kindergarten teacher should be. She has experience and compassion. Not to say that Finn's teacher won't have these attributes one day--I still want to give him the benefit of the doubt--but Finn needs these things right now. Right. Frickin'. Now. And while Eamonn and I were discussing the fact that we want to support Finn's teacher and understand that he is new and needs to the opportunity to learn, at what point do you really make a stink and say, "It is not serving my child well to be the learning lab for this newbie."

Today the OT told Finn's teacher that while it might work fine for most kids to just be walked to the cafeteria and turned loose, that won't work for Finn. He needs to be escorted to a seat (preferably the same one each time) and helped to get settled. The teacher said that would be hard to do logistically with all of these kids (the school is bulging at the seams so there are 22 or 23 kids in each of the 5 kindergarten classes). He dismissed it out of hand.

I think the real answer here is that it COULD be done if the teacher WANTED to do it. Because Mrs. I Think She Walks On Water Kindergarten Teacher has stepped up and said she will be the one to go to Finn in the cafeteria and help him get settled. I have just elevated her to Angel status so from this sentence forward, she will be Mrs. Angel. When I spoke with her tonight on the phone, she said she heard someone crying in the bathroom today before lunch, and when she went in to see who it was, it was, of course, Finn, who was upset about the coming lunchtime. Angst.

So many of the specials staff and reading teachers have come up to me and said what a dear Finn is and have offered to be there for him while he works through all of this. For that, I am so grateful.

Tomorrow we have a plan in place with Mrs. Angel Kindergarten Teacher and the librarian, who is always on lunch duty (poor soul). Mrs. Angel will get Finn settled and then Mrs. Librarian will take over, letting Finn know she's there. We'll see how it goes.

And I have to admit there's a little bribery going on here. We have said that each day he can get through the day without crying, he will receive a special surprise. "Books?" he asked me, without much enthusiasm. Dang it. How did he know? So for Monday and Tuesday, that hasn't seemed to have worked. There was a crying scene at drop off this morning. But today he came home and said he really wanted to try again tomorrow. . .if he could try to earn some Pokemon cards. Pokemon. Trains. A litter of puppies. Gold boullion. Whatever, kid. I'm ready to pull out all the stops.

My goal is to NOT go to the school tomorrow so we can get a feel for where he's at with all of this. If it does not work, because I am at my core, Hana, the Jewish Grandmother (even though I'm actually Presbyterian), and I have to think about what MIGHT or MIGHT NOT happen, I'm implementing an emergency relief plan and everyone else's opinion be dammed. Mrs. Angel talked to me about this tonight--that ultimately, we are the parents and we have to do what we think is right and not worry about what anyone else thinks. Because I do have this underlying annoyance when I think people are judging me. Anyway, I have to stop that.

What I think will work for Finn is falling back on methods that got us through 3 1/2 years of chemo, which is stepping Finn through the process, laying it out in a pictorial pattern (like on a calendar), and moving gradually. Baby steps. Really, really tiny ones.

Week One: Me having lunch at school all five days.
Week Two: Me having lunch at school four days. Finn picks the days.
Week Three: Me having lunch at school three days. Finn picks the days.
Week Four: Me having lunch at school two days. Finn picks the days.
Week Five: Lunch at school one day a week. I intend to keep eating lunch at school one day a week for eternity--the day I work in the classrooms. I did this with Declan and it was a nice treat and gave him something to look forward to.

I fully anticipate getting resistance. I fully anticipate being labeled an hysterical parent. I am prepared. I have the courage of my convictions.

Plus Eamonn said he'd beat anyone up who gave me grief. And so did Amber in Mansfield, Ohio. So I feel like I'm covered.

Monday, September 15, 2008

Remembering We Are Their Advocates

When Finn was first diagnosed, I remember my friend Anne, who is a doctor by the way, telling us that it was our job to be Finn's advocate. It may seem like an obvious thing for someone to tell you, but it can be hard sometimes, when people have way more education and experience than you do, to really stand up and stick to your guns. And really, we only ever had one big incident where I felt like we butted heads with the doctors. It happened during a hospital stay pretty early on in Finn's treatment and we were frustrated because our attending wasn't the doctor on the floor and we felt like the doctor who was there wasn't really listening to what we had to say.

And sometimes you doubt yourself. I remember talking to one of Finn's chemo nurses one time and I was telling her what I thought was going on with Finn and I wondered if I sounded like a complete idiot and so I added, "You know, because I have such a vast medical background." She laughed and said, "I learned long ago to listen to what the parents say because they're usually right." That made me feel better.

So all of this is to lead up to the story of What Happened With Finn at School Today.

Eamonn and I stayed up until nearly 2 a.m. last night talking about our options. It was an upsetting conversation because I felt like I'd really let Finn down by letting the teacher tell Finn I couldn't come to school. Eamonn and I reminded ourselves that just because Finn is no longer in treatment, doesn't mean we stop standing up for what we believe--even if it makes us unpopular. Erin reminded me that I've been pretty good about doing what I think is right and not caring what other people think. It's mostly true. I don't want people not to like me, but I guess my feeling is that in the end, we need to cut to the chase and get a job done. I try not to to be a bull in a china shop though, if I can help it.

We wanted to show the teacher that while we didn't want to undermine him, Finn was our first priority. And after the debacle of bedtime last night, it was clear that Finn is in a crisis. We were really worried about his health. Stress is bad for kids, too. So we put a little action plan in place.

First, I spent a load of money (Eamonn, avert your gaze from the Visa bill this month) at Barnes and Noble yesterday in Denver (we went down to go to the zoo and see Thomas the Tank Engine--pictures later this century). I bought several books about going to school, the most effective of which seemed to be The Kissing Hand. I remember Declan's kindergaten teacher (Oh Mrs. Durrett, how I miss you!!!) reading it to him on the first day of school and he acted out the story with little popsicle stick puppets. So, so sweet. So anyway, we read the story, Finn listened to it on CD in bed last night, and I made him a kissing hand to have in his pocket today. He keeps asking me to kiss his palm and last night he did get out of bed because he had unclenched his hand and was worried my kiss escaped. Sweetness. Declan wanted a kissing hand, too. Finn also went off to school with one of his trains and a lovey in his backpack today. Normally not something we'd do, but extraordinary times. . .

Eamonn planned to walk Finn to school this morning. Our goal was to see if Finn was truly having trouble separating from me, as the teacher kept insisting, or if there was something bigger at play, as we think. Eamonn was going to let the teacher know we had sent an e-mail with meeting time options for Tuesday morning so that Finn's occupational therapist could attend. And then Eamonn was going to say that I would be coming to lunch. Telling Finn I would be there for lunch was the only way we were going to get him to go to school today. He had to have something to look forward to.

It didn't go off without a hitch, but it was better today. Finn cried and was very upset when going into school. Eamonn delivered the news that I would be at lunch to the teacher who later e-mailed me and asked me not to come. I wrote back and said with all due respect, there was a lot more going on here than he could understand right now, and while I could not honor his request, I hoped that when we met on Tuesday he would develop a greater understanding of Finn's issues and where we're coming from.

Then I called my Mom. And she said it was time to call the principal. Which I did and which ended up being the best decision (Thanks, Mom). She jumped right on board, and without alienating either us or the teacher, she has made some suggestions to the teacher for immediate change with further changes to come after the meeting tomorrow, which she will also attend.

With that said, when I arrived at school for lunch, the teacher hadn't yet talked to the principal or seen my e-mail so he asked me not to stay. I stayed anyway and it was like a 180 from last Friday. Working in Finn's favor was the fact that the lunchroom was much quieter--they were using a microphone system instead of yelling or whistling to get the kids' attention. The difference was noticeable in Finn. He sat down, he went through the steps he needed to do to eat, he sort of ate, he talked to his friend, Jack, from preschool, and Jack's mom who goes to eat lunch with Jack every Monday. It was all good. No tears.

Eamonn also went over and observed from a secret spot. He was trying to see if I had exaggerated the lunch scene. And of course, it was so different today he now thinks I'm crazy, but I'm used to it.

During lunch, Finn said to me, "Let's make a deal. If you'll come outside for recess, I won't cry at school anymore." I about fell off the lunchtable bench (as if it wasn't awkward enough to sit there anyway). We made a pinky promise and out we went for recess were I lifted what I estimate to be the equivalent of two tons of kindergartners up so they could use this monkey bar/zip line type of thingy, and then started a round of freeze tag. I went slow so they could catch me. Right.

It was just slightly awkward because the teacher was meeting with the principal right there on the playground so I knew, of course, they were talking about me, but oh well. I've long since determined my pride has no place in child rearing.

At the end of recess, I walked Finn to line up with his class. He started to get a little downcast and sad, but he muddled through the rest of the afternoon. The teacher pulled me aside and said he looked forward to meeting tomorrow and that he would bring his mentor teacher as well.

I had a quick conference with the principal and while I know we have our work cut out for us, I am cautiously optimistic. The teacher seems to understand that this isn't personal and we want to work with him. I'm looking forward to hearing how the occupational therapist walks people through understanding SPD because we're still in the learning process, too, which I made sure the teacher knows.

I don't think I know it all, but we do know our kid better than anyone.

Tonight Finn did talk about not wanting to go to school and not liking it, but there were no tears and he was in pretty good spirits. Baby steps. It's all about the baby steps.

Thank you everyone for all of the posts and e-mails and advice. I like knowing you're there looking out for us. Plus, I now realize I have a full complement of people who will serve as assassins if I ever need them.

Sunday, September 14, 2008

Sick to My Stomach

I know, I know. First my heart is breaking and now I'm sick to my stomach. What next?

I had such high hopes thinking about Finn starting kindergarten. Now I'm dreading the school day tomorrow like I have never dreaded a school day before. Even more than that one time I went to class at Ohio State and realized a paper was due that day and I hadn't even started it. It's that bad.

I'm pretty sure I haven't posted here about this, and I'll go into more detail in another post, but last spring we found out Finn has something called Sensory Processing Disorder (SPD). Here's a brief description of what it is:

"Sensory processing (sometimes called "sensory integration") is a term that refers to the way the nervous system receives messages from the senses and turns them into responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation– "sensory integration."

Sensory Processing Disorder is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, Ph.D., likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly.

SPD can affect people in only one sense---for example, just touch or just sight or just movement---or in multiple senses. The disorder may lead one child to over-respond to sensation and another to under-respond. Sadly, misdiagnosis is common because many health care professionals are not trained to recognize sensory issues. These sensory issues can drive some children to seek sensation (which can look like hyperactivity) and others to avoid sensation (which can look like aggression or withdrawal)."

For a long time, Finn has been hugely sensitive to sounds that the rest of us think are loud, but don't cause us too much discomfort. We wondered if the chemo had caused Finn's ears to be OVERLY sensitive to sounds, so we took him for a hearing test in May. The good news was that his hearing was normal. But the audiologist suggested that Finn be evaluated for Sensory Processing Disorder. Ironically, I knew what it was because a friend's daughter had been diagnosed with it last year. She has been a great resource for me (thanks, Robin!) and her daughter's success with treatment has made me feel really positive about the future outcomes for Finn.

So this summer Finn went through the evaluation process with a local occupational therapist and he will begin OT some time this fall. His issues tend to focus around over sensitivity to noise and light and he's very sensory seeking--playing rough, breaking things unintentionally because he literally doesn't "know his own strength," etc. But basically, when he's around loud noises, his system overloads and he struggles to function. Going places with loudspeakers or buzzers is next to impossible. It's not a big deal. He knows it will bother him and he just chooses not to go certain places.

We were concerned about trying to get some strategies to help him as he started school, but never in my wildest dreams did I imagine that he would have such a negative reaction to school. To me, it all goes back to the SPD. Starting kindergarten has really brought out a whole host of problems.

Pretty quickly after the excitement of the first day wore off, Finn has said each day that he doesn't want to go to school. As it is with 5 year olds, we've had trouble really pinning down the reasons why. At first, the fact that he missed me seemed to the biggest issue, but we had expected that. We walked in with him the first few days, as the other parents did, too, and then we've tried to pull back a little each day.

Finn's teacher is a young man who is in his first year of teaching. So far I've liked what I've seen and heard about him. But on Friday, everything came unglued.

On Thursday, I could tell that Finn's teacher was not happy that I was inside the school with Finn when the bell rang. I had come to school early to help the librarian at the book fair, and because we had arrived before the "approved" time, I brought the boys in with me. I didn't think it was a big deal, but the teacher made a point of telling me that "we're trying to all meet outside." Well, OK, I thought, but what was I supposed to do? Leave my kids standing outside unsupervised for 20 minutes? I had to do the same thing on Friday and the teacher seemed annoyed again, even after I explained about working at the book fair. I guess I won't work at the book fair for the time being since it's causing so many problems.

On Friday morning, Finn was very upset and adament that he didn't want to go to school. It's so hard when they do that. After talking to him and asking questions, it appears the the lunch room is root of the problems. There are 110 kindergartners in there at once. It's loud, they're herded around like cattle, they have about 15 minutes to eat, the lunch room staff flash the lights to get the kids' attention, and the lunch lady goes so far as to whistle shrilly on her fingers to get the kids' attention. I know this because I went to school for lunch Friday. It's a total recipe for disaster for an SPD kid.

After Finn was so hysterical about not going to school and being upset about lunch, I thought I would go to lunch and help walk him through the process, explaining about each step and why certain things were going on (the school really encourages parents to come to lunch with their kids and visit). When I got to school, I saw Finn's class pass by. My plan was to stay out of sight and only make an appearance if he seemed to have problems.

I peered around the corner and saw that Finn was crying. Sobbing. No one was offering any comfort or even talking to him. I went to him and asked what was going on. In hysteria he told me he didn't want to go into the lunchroom, that he wanted to go home. I told him I was here to eat with him and help him in the lunchroom. He pulled it together, but only briefly. As soon as we got into the lunchroom, he was melting down in a way I have never seen him. He was crying, asking me why the lights were off, what was all the noise, why were they shutting the doors. Everyone just scatters and grabs a seat. It was clear to me he was confused about where to even choose a seat in the melee.

We chose a seat with some girls he knew. He couldn't even get it together enough to open his lunch and start eating. Because the monitors walk around saying "10 minutes! Hurry up! 5 minutes!" he was panicked. Truly, it was heartbreaking. He didn't know what to do. I was just talking him through the steps, "Sit down, open your lunch box. . ." when I got a tap on my shoulder. It was Finn's teacher who was very unhappy that I was there, saying that he had given Finn "multiple chances during the morning to settle down and do his work and he wouldn't do it" and that I needed to just cut the cord and say goodbye quickly in the morning and that I was creating all sorts of problems with Finn in the morning. He went on to say that now my being there was rewarding Finn's "bad behavior" in the classroom and that I couldn't come to school for lunch again until Finn got a grip and could go through the morning without missing me. Excuse me? WTF?

Now, to be fair, Finn's teacher only has the bare minimum knowledge of Finn's background. Because the start of school is always so frantic, I have only had time to mention some of Finn's issues in passing. We were supposed to meet last week to discuss things, but with Finn being sick two days, which just added insult to injury in the adjustment department, we had to postpone. I have requested a meeting, but Finn's occupational therapist isn't available until Tuesday, and I think it's imperative that she be a part of this discussion, and that means another day of Finn having a nervous breakdown at lunch.

So when Finn's teacher was telling me all of this in the lunchroom, I expressed my surprise that there was an issue in the classroom where Finn was upset--I had no idea. But then I tried to explain that Finn was overwhelmed in the lunchroom and I was trying to help him interpret what was going on in there. Finn's teacher insisted that it's his job to do help Finn do this and that I'm not letting him do his job.

I'm sorry, but if it's day 5 of school and my kid is becoming more hysterical by the day, something isn't working. One thing we've noticed with Finn's SPD is that the learning curve is very stretched out. What a typical kid may figure out after one or two times of demonstration, Finn may take weeks.

So we stood there in the cafeteria, Finn hysterical, the teacher pretty much dressing me down in front of the whole cafeteria of kids and the entire kindergarten staff and people on lunch duty. Then he called Finn over and told him that I wouldn't be allowed to come to school until he (Finn) stopped crying and missing me. Well, as you can imagine, that sent Finn over the edge. And so much for the teacher saying it was his job to help kids in the lunchroom. The teachers walk the kids in and leave. He apparently thinks that walking them down there and telling them what to do is enough. And it may well be for some, but it's not going to work for Finn.

So I did end up staying to see if I could stem the tide of disaster. I have to confess, I had originally planned to stay and eat with Declan, too, but I felt so unwelcome (and this is totally contrary to the school's policy by the way because they tell parents all the time to come and have lunch and go out to recess with the kids) that I left. I went home and, embarassingly, spent the rest of the day crying and venting to my mom and sister, who both taught kindergarten (my mom for 30 years so I pretty much defer to her). In fact, I half wondered if my mom would tell me that I was way off base going over there today. But no, she had thought it was a good idea and was appalled when I told her everything that had happened.

I am so disheartened. I do so much volunteer work for the school, the PTA, and even at the district level and I feel like this is how I'm repaid--made to feel like a hysterical mother who doesn't know what she's talking about. First, I do already have a 3rd grader so I've been around the block a few times. Second, I feel like I have a knowledge of Finn and what works with him that extends far beyond what normal parenting requires. It's just a function of how our lives have been these last four years. With all of my volunteer work, I've always hoped that I would create a situation where people at the school know me and when I have a concern, it's taken seriously because I'm not some random parent who's never around. Just the opposite. Now I feel like a doormat who has done all this work and they still they're just dismissing my concerns and berating my parenting.

Now, in a week's time this may be a non-issue. Maybe when we meet with Finn's teacher he'll have a better understanding of how the SPD is dictating Finn's reactions and he'll help us find some solutions. But right now I truly feel broken.

I'm going to swear here, so avert your gaze if you think you might feel offended. I feel like Finn has had nearly four years of shitty, unhappy things happening to him. Why does kindergarten have to be a shitty, unhappy thing, too? If it means we have to take some extra time and eat lunch with him until he's comfortable with the process, what's the big fucking deal? Really. I'd love to know.

So now I just need to take a deep breath and let it go and prepare to meet with Finn's teacher on Tuesday, and I need to get through Monday somehow thinking of Finn having a meltdown in the lunchroom. It may possibly be more than I can bear. I am literally sick to my stomach. If I had some balls I'd gently tell the teacher tomorrow that I will be in the lunchroom on Monday. I feel sick.

Thursday, September 11, 2008

Breaking My Heart Just a Tiny Bit

Finn went back to school yesterday. Not very willingly, I might add. He sniffed and snuffed and coughed and wheezed and tried to convince me that he needed to stay home. He said he wanted to be with me, but I suspect he really wanted to be with the TV because he did a lot of TV watching on Monday and Tuesday while I desperately tried to get some work done.

So he went yesterday and seemed fine when I met him after school.

This morning, he went somewhat willingly so I guess I should take heart in the fact that today it was easier.

We walked over to school early because I had offered to help ring up kids' purchases at the book fair in the library. Kids can come in and buy books before and after school and I like to go in and help out when I can. I really like the librarian--she's a cancer survivor herself and knows Finn's story.

So this morning I was working the cash register and then Finn and Declan went off to their classrooms at 8am. As soon as they were gone, Mrs. M (the librarian) came over to me and said, "I have to tell you what Finn said to me yesterday." Mrs. M was on duty in the lunchroom and Finn walked up to her and tugged her sleeve. She looked down thinking he was going to ask her for help opening his milk or something. Instead, he said, "I miss my mom."

Mrs. M said he said it in a very matter-of-fact way. She is such a kind lady and she pointed out to him that he was heading out for recess and then it would be just a short time after that when I would come pick him up.

He seemed satisfied with this reply and went back to his seat.

I've told that story to Eamonn and my Mom already this morning, and each time I tell it, I get a little twinge in my heart. It makes me giggle, but it also makes me a teensy bit sad.

Growing up can be hard.

Not sure to whom I'm referring with that statement--Finn or myself.

Sunday, September 7, 2008

It's Deja Vu All Over Again

Last Wednesday night, the night before the first day of school, I finished my work that night and quietly did a little yippee dance because with both boys now in school all day, I no longer have to stay up late at night and work. No, now I can do more useful things like surf the Internet, make Eamonn rub my feet and watch real life crime shows like 48 hours and worry about what is wrong with people today.

Then Finn apparently picked up a whacking great head cold on his first day of school.

It's 8:24pm MST. And I am starting my work for tomorrow. Sigh.

Friday, September 5, 2008


First day of school: September 4, 2008. Declan (3rd grade) and Finn (kindergarten).

I was working on a very different post about the boys' first day of school. A friend asked me if I was sad about Finn's first day of kindergarten yesterday. And I guess I did have some little pangs because he seems like he might be in a little bit of shock--and possibly a little annoyed, too--that suddenly that he has to go to school all day every day for a very long time. Glad it's not me!

But seriously, when I think about it, I'm not sad about Finn going to school as much as I am grateful. I'm grateful that he's here to go to school at all. I don't care what kind of cancer a kid has--a kind with a 85% survival rate or a kind with a 10% survival rate--as a parent, you don't want any statistic hanging over your head that says your child might not live to go to kindergarten. Or drive a car. Or go to their senior prom. Or college. Or whatever. The innocent "everything is right with the world" security that I had before Finn's diagnosis is likely gone forever, but there's always hope. And I think that's what I felt today when Finn walked through the doors of kindergarten. Hopeful that this is the start of yet another chapter of a long and happy life for Finn.

September is Childhood Cancer Awareness Month and tonight is Stand Up to Cancer. It's airing at 8 p.m. eastern time for 60 minutes. Check out the preview on NBC's Web site.

Stand Up to Cancer Preview

It gave me a few chills. And then I watched this and shed a few tears.


My point here is that in these last few weeks of watching all sorts of partisan politics on TV and being alternately enthusiastic, confused and annoyed, I am reminded that cancer knows no age boundaries, has no religious or political affiliation, and doesn't care if you're black, white, purple or green. We all need to Stand Up to Cancer regardless of where else we agree or disagree in life. Watch Stand Up to Cancer and feel grateful and hopeful. That's my plan.

Finn--ready to go.

Declan--wishing he had his sunglasses.

Declan with his new teacher. I thought I'd give her some anonymity on the Web by not printing her name, but that's all out the window because of the sign. I have no idea how to black that out. Sorry, Mrs. T.

Waiting in line.

Declan meets up with a buddy.

Walking in.

Listening to instructions.

Discovering his good buddies, and twins, Dillon and Jayden are in his class--priceless.

Sneaking up to Declan's classroom to spy on him.

Yep, I'll take grateful over sad any day.

Tuesday, September 2, 2008

I'm sure you thought it was wishful thinking. . .

. . .when I said I'd hoped the Jonas Brothers would pick us out of the crowd to go backstage and meet them. . .


Kendall (my friend Marci's daughter) and Declan backstage with the Jonas Brothers at their concert in Columbus on August, 23!

Holy cow! It was awesome!

But no, it wasn't blind luck. It was a carefully orchestrated event.

Let me start by saying, I love the Jonas Brothers. First, they're darn cute. Second, I think they're pretty talented. Their music is fun and it's something we can all enjoy when we're driving around in the car. I can't quite say the same thing about some of the music we've listened to over the years. I mean, how many times can you listen to Big Rock Candy Mountain before you want to actually drive over the edge of the mountain?

So we've been Jonas Brothers fans ever since they burst onto the Disney Channel scene about a year and a half ago. I always thought it would be fun to see them in concert.

Back in May, when Marci and I were trying to coordinate a date to get together when we were in Ohio, I mentioned the weekend of August 23rd. She said it was perfect because she and Kendall would be in Columbus for the Jonas Brothers concert. I freaked out--via e-mail. What luck! JB in town the very weekend we would be there? Sweet! I could get nosebleed tickets just one section over from the nosebleed seats Marci and Kendall were in. Yay! But then I remembered that Eamonn's cousin can sometimes get awesome seats through his work. So I made the call and yes, Skylar could arrange it so we could buy seats in the corporate area of Nationwide Arena--no cramped stadium seats for us! Marci ended up selling her nosebleed seats for a huge profit and joining us in the sweet seats. We were set for a great evening. Declan was psyched. Frankly, so was I.

But I had another idea. Right around the same time all this was happening with the JB tickets, we were also setting up Finn's Make-A-Wish trip (which I'll write more about another time). And even though we will all get to go on this trip and it will be great fun, I can always tell when Declan is feeling a little bit like "Finn is always the center of attention." He would never verbalize those thoughts, and maybe he doesn't realize why he feels down sometimes, but as a parent, you know. Originally, I had asked both boys if they wanted to go to the concert, Declan said yes immediately, but Finn said no because "it would hurt his ears." (He has been diagnosed with something called Sensory Processing Disorder, and I'll write on that in yet another post, but suffice it to say, he knows his limitations and knew the noise would be too much for him. He was way right.)

So basically, it was shaping up to be a special evening for Declan, which I was excited about. It was a chance for him to have an evening all about him. And I thought to myself, "what else could I do to make this an evening he'll never forget?" And then I went on this mission to see if we could meet the Jonas Brothers. It almost didn't happen.

My first attempt was to contact Nationwide Arena. As if. I sent an e-mail to their communications person, explaining a little bit about Declan and what our family had been through the past 4 years, about how Declan was an awesome big brother who had supported Finn, etc., and I wondered if it might be possible for Declan to meet the Jonases because we love how they're brothers and work together, blah blah blah. No reply whatsoever. Which totally makes sense. I'm sure they have a million crazy people making up whacky stories to meet the Jonases. I was just another of the crazies.

But I would not be denied.

For weeks I wracked my pea brain to see what I could come up with. Should I write directly to the Jonas Brothers? I wondered how long it would take a letter to reach them given that they probably get 1.27 billion pieces of fan mail a day. Should I write to Mrs. Jonas and plead with her as a parent to let my son meet her sons? Good grief. She'd probably be so freaked out she'd cancel the concert and I'd get death threats from every teen girl in the Central Ohio area. That would be so uncool.

Finally, I decided to do something I swore I'd never do. One of my BFFs, who I've known since middle school, is an actor in LA. I won't publicly embarrass her here, but I love her to bits and we stay in touch. And so I called. Got her voicemail.

Me: "I have a favor to ask and I swear, this is the only time I'll ever ask you to use your fame and fortune to do a favor for me--and technically this favor is for Declan--until they make a movie of my life and I ask you to play me. Call me."

She called back.

She: "This is hilarious. I can't wait to hear what you think I can do."

And I told her. And she said, "You know, I think I can actually do that." But then I didn't hear back and I figured all was lost. Oh well. She tried.

The day before the concert, Marci and I were making plans about where we should meet, because with our sweet seats came sweet free VIP parking, and of course, what we should wear. She was going casual in shorts and flip flops.

And then I got the call. We were going to meet the Jonas Brothers! She hadn't been able to call and tell me until she got final confirmation, but we were on! I contemplated not telling Declan, Marci or Kendall and letting the whole thing be a surprise, but then I figured Marci would kill me if I let her meet the Jonas Brothers in shorts and flip flops. She was grateful for the heads up. Declan overheard me telling Marci and was practically hyperventilating, which made me glad he knew in advance because I was actually a little worried that he'd freak out and go silent or something when he met them. Marci told Kendall for the same reason. They needed a little advance warning.

So we got down to Nationwide Arena and picked up our meet and greet packet which instructed us to be at a certain area at a certain time to meet the brothers along with 350 other fans. So it wasn't like we had a private audience with them or anything. They didn't even have time to do autographs. I warned Declan he'd just walk up and they'd take the picture (a photographer takes your camera from you and he takes the picture to ensure no one stands there taking a million bad shots) and they we'd move right on. When our turn finally came, Declan walked right up to the brothers and went right down the line to each of them, "Hi, I'm Declan," and shaking each of their hands. The JB's handlers were totally cracking up and I heard them say, "Check out that kid! He's introducing himself! Great manners!"

I actually missed seeing Declan do his handshake routine because I was trying to get out of the way of the photographer and I didn't stop and really absorb the fact that we were meeting Declan's generation's equivalent of David Cassidy or Donnie and Marie. And as Marci and I were trying to get out of the way, Kevin Jonas actually called out to us and asked us if we wanted to be in the picture, but by then the picture was taken and we were being escorted away. Ah well, at least we can say a Jonas spoke to us.

But just look at Declan's face. Priceless. Joe: "I can't take much more of this!" Nick: "As soon as this torture is over, I'm totally texting Selena Gomez." Kevin: "My face is frozen."

Seriously though, they were all very gracious.

My dear BFF in LA, thank you, thank you a hundred times. I hope you got all of the text messages I sent while we were waiting in line!

The concert itself was incredible. Those boys know how to put on a show. I was dancing around, singing and making a lot of noise. When I looked over, Marci was doing the same. Although I will say that we were not screaming nearly as loud as the tens of thousands of teen girls in that arena. How does one scream at such an ear splitting pitch? Truly, it was deafening. It was days before my hearing recovered.

Declan is still talking about it. He said to me, "I had tears in my eyes when I was shaking their hands." And that put tears in my eyes.

A few pics from the evening.

On the table top were screens that showed text messages from the fans. We sent a text message and were trying to see if we could photograph it when it came up. I'm guessing our text was about the 2 millionth in line.

Marci has a sweet camera that could take great far away shots. We were on the opposite end of the arena, but her camera zoomed us right in. So this shot is from our seats showing the arena floor.

Marci, Declan and Kendall ready for the show.

Me with Declan.

The concert starts with the Jonases rising out of the stage floor. A deafening roar is going on right now.

Declan and Kendall get their groove on to the JBs.

Joe Jonas singing away.

Declan attempts to preserve his hearing.

And then decides if you can't beat 'em, join 'em!

Singing a duet with Demi Lovato (from Camp Rock). She actually was one of the opening acts, but we missed most of her while we were at the meet and greet.

Singing Burnin' Up. . .which is the big single off their newest album.

Our table.

More about our trip to Ohio in another post. . .