Friday Night Leftovers

On Sunday we headed out to Disneyland with the boys. I have to say that it went so much better than I anticipated. We met several characters and watched parades (which was hard last time because everything was so loud). We even ventured on quite a few rides! The boys were pretty well behaved the entire time, despite staying up late, getting up early, and not really napping. I couldn't have asked for much more than what we got, it was that nice.

I did a few posts over on the boys' blog here and here if you'd like to see pictures.

~~~

When we got home and I had yet to see any information from the boys' school, I called to see when we'd get something. Come to find out, the boys had been registered for first grade rather than kinder because of their birthdate. (They made the cut-off for kinder last year by four days. I held them out another year any way.) They also were not in the same class like we were told would happen.

Um, hello? Why would I have filled out KINDER registration forms if I wanted them placed in first grade?

A few phone calls later and everything was cleared up, but still. It doesn't instill confidence when that kind of thing happens.

And WTF??? about every single thing we try to do becoming an issue? Come on, universe, this is ridiculous!

Anyway, Tuesday is a meet and greet with their teacher. They start school on Wednesday. I started hyperventilating yesterday. It's all good.

~~~

Ja.son asked me what would happen if someone brought a knife to school and cut his leg in half.*

OMFG! There is never anything on the television other than Nick Jr. or Disney Jr. while they are awake. I don't watch the news until 11 pm. Frankly, the boys are as sheltered from violence as much as I can possibly make them. I have no idea where that kind of comment could have come from, but it rattled me.

I don't know if maybe this is some kind of response to the recent walking and standing (20 seconds so far and counting!) that he's doing, or if he really did hear something somewhere and internalized the fear. Maybe it's a combination of both. It makes me sad, though, that he has that kind of thought floating around in that brain of his no matter what the reason behind it.

*I told him that he did not have to worry about that kind of thing happening. He will be very safe at school. He then went on to ask what would happen if he fell down at recess. Sigh.

~~~

On Wednesday I read in the newspaper that the Ea.ster Se.als pool at which the boys get their therapy is going to close. Apparently it would be costly to make repairs to the 40 year old pool, so they decided they'll close it.

Today. They closed the pool today. The employees (and therapists) were told the pool was closing four days ago. So...yeah. It looks like we won't be doing swimming therapy for a while. Bummer.

Universe, please see the above WTF item. Sigh.

~~~

I start school on the 26th.

What happened to summer?

It went by too fast!

~~~

Stop by Danifred's for more Leftovers.

The Boys' Appointment in a Nut Shell

Today was one really long day at Shriner's. In fact, we were gone from the house a total of twelve hours. We are all wiped. I feel like it was a really productive day (with some good and bad in the mix), which hasn't happened in a long time. Is.aac and I also really like the doctor we saw today. She was knowledgeable and actually talked to us about our insights and goals for the appointment.

The good:

Both boys were x-rayed and assessed. We also received two different assistant devices right there on the spot. It is so nice to have that over and done without having to wrestle with insurance/scheduling. I have to say that this kind of ease when performing necessary scans and orthotics supplies is exactly how the medical world should work.

Ja.son is doing everything he needs to be doing. His AFO's are good. His walker is good. His x-rays looked great. For now, we need to continue his stretching and keep on keeping on. Excellent! He goes back in 6 months for follow-up.

The bad:

Sh.awn was sent on his merry way with both knee immobilizer braces (They do just what you'd think--keep you from bending your knees. Doesn't that sound like fun?) and a hip pillow for sleep (I can already tell you the pillow this isn't going to fly).

We saw PT and were given some targeted exercises to do with him three to four times a day every day.

He'll also likely need Botox injections to relax a few key muscles in his legs. (That would be done at our local orthopedist as Shriner's doesn't do Botox any more.)

The ugly:

Sh.awn's x-rays did not look as good as we had hoped, and has been diagnosed with bilateral hip dysplasia. My understanding of it (without me having done any research, so keep that in mind) is that Sh.awn's hip joint is approximately 30% out of normal alignment. (In other words, his joint is only 50% in the socket, when normal would be 80% or more in the socket.) This could be the way he's been for quite some time, which is what I believe because nothing significant has changed in his flexibility/movement, or it could be something that is rapidly changing which would mean we would likely need to surgically intervene.

So what does that mean? Well, if at any time his joint falls to 35% (or below) in the socket, surgery would be necessary soon. If not treated, the hip could become dislocated resulting in pain and arthritis. It is also harder to correct should the hip joint dislocate.

If it stays where it's at, there is still a strong possibility of surgery sometime between 8-10 years old. (There are differing theories on this but the doctor we saw believed it is more beneficial to be proactive and treat before dislocation is eminent.) The part that freaks me the fuck out, though, is that the recovery period is very extensive--it could take up to a YEAR to make it back to baseline in mobility.

A year. Just typing that makes my heart hurt.

We are going to try a couple of different stretches and the torture devices braces/pillow to see if we can correct (not likely) or stave off surgery for a long time to come (if ever). We go back in three months for Sh.awn to get reassessed and have more x-rays taken for comparison. We'll know more about whether this is a rapid decline or a slower decline then.

~~~

There is also the whole insurance thing to figure out as well. I tried to get authorizations for Shriner's, but my insurance company would only refer us to the Children's Hospital. Shriner's knew that going in to the appointment. I was told they'd still try to bill our insurance, but they'd absorb the cost should our insurance refuse to pay. (We are all assuming they won't because they didn't "authorize" us to go, but they're trying anyway.)

Sh.awn has an appointment for follow-up in November. Ja.son's follow-up is set for January. So the intent to continue with Shriner's is there. But, I'm not yet sure how it will work should we continue to go back to Shriner's as far as insurance goes. That's a discussion for another day, I decided. My brain was fried and the boys were fried; after ten hours, it was time to leave.

Now I'm off to go eat chocolate--Reece's minis to be exact.

Yesterday

The idea of a chair has been floating around in the background for some time now, but I've always resisted taking that step. It isn't something that is absolutely necessary exactly, but it is something that might make him feel more independent while he is at school or out and about town. My fear, though, has always been that he'd get stuck in a chair and never get out. I worry that he might think rolling around is a whole heck of a lot easier that walking around, and he'd just give up on walking all together.

So when the idea of a wheelchair was brought up, I'd push it away. Let's get him as firmly established with walker as we can before school starts. Let's build his stamina so he can walk longer distances before tiring. (He can walk, but he tires easily.)

So yesterday, I felt a bit blindsided about testing the chair. "Hey, we have a chair here for a demonstration we're doing on Saturday. Why don't we just try Sh.awn in it today?" For the life of me, I couldn't think of a way to say no at that moment, because really, there was no reason to say no except that I'm uncomfortable with the whole idea.

But it isn't about me, it's about him.

My feelings really aren't what matters here. It's about him and his needs. I agreed to let him try it.

Seeing him yesterday, in the wheelchair, hit me harder than I expected. I was not prepared (again...ever?) for my reaction when I saw him in it. It took everything in my being not to burst into tears. My mind raced with "Oh shit, oh shit, oh shit," while I desperately tried to reel in my emotions.

It's about him, I reminded myself again.

After a deep breath, I allowed myself one text to Is.aac that included the picture I posted here and a frowny face. Then, I squashed the impulse to crumple into a weeping mess, put on my game face, and did my best to encourage him as he maneuvered around the room.

He could have cared less one way or the other. He was fine in the chair. He was fine in his walker. He was just plain fine. He acted as if the entire event was no big deal.

Because for him, it was no big deal. All he wanted was to get to the next toy in the room; he couldn't have cared less about how he got there.

I was am the one with the hang-ups. As much as I try to be upbeat and positive about everything when it comes to the boys, I sometimes fail miserably. Yesterday was one of those days.

I can't say that I am in love with the idea of getting him a wheelchair. I can't say if it will even come to be that he gets one.

All I know is we'll do what needs to be done for him because he is the only one that matters in this equation.

Mostly Wordless Wednesday

Still wrapping my mind around this. Man, it's hard.

More

It started off innocently enough. We had just started out on a thirty minute drive on our way to the boys' swimming therapy.

"Mommy, look! That man has canes!"

Sure enough, he did. He's a neighbor, who lives a few streets over from us. We've passed him many times before, but today it finally clicked in his head.

"Why does he have canes?"

I thought about it for a few seconds before I answered simply that it was because he used them to walk.

"Why?"

"I'm not sure why he needs the canes to help him walk, kiddo. I think it's pretty cool that he is walking with them, though. Don't you think?"

"Uh, yeah..." he said. Then he added, "Why do I need a walker to walk?"

There it was.* I don't know why I am always so unprepared for this type of question. It isn't like I shouldn't know they are coming my way. But to be honest, he has never really asked me why he doesn't walk. He doesn't see anything wrong with not walking without his walker, I do know that. For him this is normal even though he knows other kids do walk without walkers. (Hello, he has the constant reminder of Jack to help with that.)

Both boys know they have CP and have a vague sense of what that means. I've told them about being born premature (although Ja.son does NOT like talking about how he was sick and in the hospital for a long time. He wants to talk about his life once he was home) and their rough beginning.

Still neither has ever asked for more about the differences, namely their lack of walking.

The plan has always been to follow their lead on things. We'd wait to really talk about CP and its implications for their lives when they wanted more.

Today was a day for wanting more.

More they got.

I hope I did it justice.

~~~

*Why don't they ask these questions of their father?!

Friday Night Leftovers

We are back from our trip to San Diego (or "Santiago" as my boys insist on calling it) today. We had so much fun.

The boys loved the hotel room. They were more excited about that than anything else when I told them we were taking a trip.

Jack loved the hotel room phone.
He would not leave it alone.

They were so good while we were gone. Sh.awn has a tendency to get overwhelmed when he does new things, but he handled himself like a champ. Jack was our wild card, because he had not been anywhere with us yet, but even he was a rock star. Ja.son talked the entire time we were gone. I am surprised he has a voice left after all of that talking.

Ha! Is.aac ended up on the pull
out couch the first night.
Jack and I slept on the other bed.

The weather was great, too. I managed to go most of the day at SeaWorld without a jacket. That's pretty big in my always cold world.

Is.aac with a bit of sunscreen on his face.

We slathered on the sunscreen as you can see above. No one got sunburned but me, of course. I apparently wasn't as careful on the application of my own sunscreen as I was when I applied it on the boys. Ouch.

The boys each had a favorite part of the day and we tried to make sure they each got a chance to do what he wanted. Ja.son loved the Turtle Reef exhibit, Sh.awn was all about the Shamu show, and Jack loved the Sesame Street water area.

~~~

Today was the official end to my vacation. It goes too fast!

I have 44 days left of school. I can make it. I hope.

~~~

I set up the big boys' water therapy evals for two weeks from now. We take them in to have them assessed on their needs and then they'll come up with a therapy plan. I am excited by this therapy. I hope the boys love it.

I still have to get appointments for the neurologist, orthopedist, and neurosurgeon (with CT scans). Ugh.

~~~

The school district finally called about the letters I sent in the day I enrolled the boys. I asked for an eval for the boys, among other things. At the very least, there needs to be a 504 for Ja.son and an IEP for Sh.awn because I know there is an expressive speech delay.

I knew the district was out of compliance, but I was sort of biding my time once they missed the 30 day timeline to respond. I figured if they were panicked over making nice, I could use that to our advantage.

I was right. They are panicked. Now I have to see how I can use that to help us get what we need. Wish me luck.

~~~

My mom is going to come watch the boys tomorrow (Saturday) so Is.aac and I can go out for dinner. Yeah!

~~~

Today, the 12th, was my dad's birthday. It's um...yeah.

~~~

The 15th of this month is my 6 year Blogoversary. I can't believe it's been that long since I started blogging. It feels like longer. It doesn't feel like it's been that long, too.

~~~

My birthday is next Thursday. 41. OMG. How did that happen?

~~~

Stop by Danifred's for more Leftovers.

Therapy Fatigued

My boys have been in therapy for five years now. Do I think it has been worth our energy and time? In some ways. Maybe? Do I think that the gains made by the boys over those years would have been made otherwise without going to therapy? I'm torn. Physical therapy is beneficial. Occupational therapy is...frustrating. I think I do more targeted work on their fine motor skills than their therapists do. So why do we continue to do it? Sigh. I guess it is because I can't really say if it is or isn't truly helping them. 

What I can say is that I have a strong love/hate relationship with it.

I can also say that we've all officially hit the wall.

My spring vacation starts on the 29th. I have cancelled all therapy appointments during the two weeks I'll be off, so we can just be.

I am almost giddy with the excitement about us having this time off. Although I'll admit to feeling a whole lot of guilt about it, too. The boys are looking forward to doing fun things with mommy and staying up late to watch Bubble Guppies. (It's the little things that make them happy. lol) The excitement is enough to tell me that this is the right move and will be good for us.

Friday Night Leftovers

I decided that I wanted to get my hair dyed. I went from my natural dirty blond color to a medium brown which is the same shade as Sh.awn's hair. I love it!

The boys? Not so much. Ja.son told me that he liked my hair except for the funny color I made it. Sh.awn told me that my hair is dirty. Lol. Oh well. They'll get used to it. :-)

~~~

I am now on vacation until January 7th. Yea!

~~~

A woman I met on a preemie board asked me to go to the NICU with her on Christmas Eve. I am nervous about it. After all this time, I have never been back to it. Even when I had Jack, I managed to avoid that area of the delivery wing.

Isn't it a small world when you're on a preemie board of under 200 women from around the country and you find someone who has the same OB, delivered in the same hospital, works in the same city you do (doing the same thing even), and knows people you know? It boggles my mind sometimes!

~~~

I finally got out my Christmas cards two days ago. Yep, it took me a month to get out those cards I started the day after Thanksgiving. Lol. People seem to like them, too. Yea!

~~~

It rained a few days ago. We once again got ants afterward. Blah. It annoys me that we get our house sprayed regularly and still get ants.

It annoys me more that we likely have five or six more days of rain ahead of us.

~~~

The boys just had their six month evals done for therapy. Ugh. I hate this time of year. I was pleasantly surprised, though, at how much more accurate they were this time. Finally, the therapist believe us when we tell them that the boys can do stuff they don't see at therapy.

Even better, finally we have people who are skilled in what they do. It makes such a difference for us all.

~~~

I'm doing the "12 Days Till Christmas" over on the other blog if you're interested. It's silly but fun. (Well, at least I think it's fun.)


Stop at Danifred's for more leftovers.

17 Days...

On this day, five years ago, Baby A's (Sh.awn's) sack ruptured. I was exactly 26 weeks pregnant.

The countdown to the boys' birth is on...

I'd be lying if I said that wasn't one of the scariest times in my life - a time filled with fear and stress. And while the date doesn't have the same emotional hold on me, I guess it says something that the day itself still stands out on the calendar. I know it's coming, and I most certainly know it's here.

Now, rather than focus on the feelings from then, I focus on the joy those two little men sleeping in the next room bring to our lives.

I marvel in how much they've accomplished in their lives, things that some might have said would never happen.

I revel in pride.

Today I focus on my amazing boys. We may not know what the future holds, but we do know we're going to face it with strength and determination!

In 17 days, my big boys are going to be 5.

Wow.

~~~

Last night, on Parenthood, there was a scene where the entire family was at the baseball field watching one of the boys play ball. The boy sat most of the game in the dugout until the grandfather went to the coach and demanded the boy get to play. The coach relented, allowing the boy to finally be called up to the plate. On the boy's third pitch, he hit the ball and ultimately scored a home run while the entire family cheered him on.

Oh how I cried.

We did baseball when I was a kid. (I was even on a Little League team for first and second grade. That's how into baseball my family was.) My older brothers played until they aged out of the league, my dad was an umpire for the league, and my mom managed the concession stand, so we spent many hours at the field as a family.

I guess that was how I pictured my life would be when I had kids. We'd live at the field during baseball season like my family did when I was little. I'd sit in the stands and cheer my boys on as they raced around the bases. We'd head to the local pizza joint to celebrate with the team after a hard fought win.

Last night, it struck me that we'd not have those kind of family memories.

My heart ached with a crushing intensity, and I cried like a little baby over a silly little dream.

Sigh.

I think I have it all under control (maybe I mostly do?), but there are days when the scab over the loss of what I expected our lives to be is ripped off. It takes a bit of bleeding before I can build the scab up again, I suppose.

~~~

I was still feeling pretty raw when I went to pick up the boys for therapy. There's nothing quite like the assault of reality on already fragile emotions, right?

Imagine my surprise when I discovered the therapists had created a mini baseball game for the boys to play today.

It was all I could do to hold myself together as I watched them hit a ball off a tee and run around the bases.

I still get emotional thinking about it now.

Unknowingly, the boys' therapists gave me the salve for my bleeding heart.

I so needed a reminder that while things may not be the way I pictured them, they are still pretty damn amazing.

I really do have so MUCH to be thankful for in my life.

Weekend Leftovers

The latest on the TB drama: They sent my grandmother to the ER yesterday so she could try to produce a sputum sample. (I swear I am never going to think of coughing in the same way after this whole ordeal.) Of course, she could not. The nurse listened to her lungs, which sounded fine. They put in a call to the doctor in charge of her case. (I think this her case manager at the CDC, but I don't know for sure.)

Now, they are saying because there is no way to confirm or disprove that she has an active case of TB due to the lack of sputum (WTF?!!!?), she will be forced to stay in isolation and take the medication for a total of 8 weeks. That would theoretically make her no longer contagious if she actually did have an active case of TB. And if she didn't? Well, she would only be forced to take the minimum course of drugs.

I mean...come the fuck on already! The whole thing of not being able to confirm that she ever did have TB in the first place just pisses me off even more.

The medical world drives me insane sometimes.

Or a lot of the time.

~~~

School continues to kick my rear end, but we are definitely getting into a groove again. It has been hard on us all to get up early, I have to admit that. At least two of my boys share their mother's aversion to mornings. Ahem. The third boy is an early riser but slow, so he doesn't really help matters.

We all enjoyed the lazy days of summer, that's for sure!

~~~

Therapy has completely switched over to our new therapists. The change has been remarkable. Seriously. While the only one it really affected was Sh.awn (both of his therapists have been changed), him being happier when we go has made the world of difference in us all.

He asks to go to "school" every. single. day. now. Every day.

His OT is quirky but sharp and willing to learn (and apply!) all that he can about Sh.awn. He has listened to what Is.aac and I had to say and has a plan! for how we can move Sh.awn forward from this plateau he's been on over the last year. So exciting!

Sh.awn's new PT is pretty amazing, too. She has an amazing skill at redirecting him and making him think that what they are doing is his idea. ;)

~~~

Other Highs! and Lows:

• I cut the big boys' hair yesterday. They both did so much better than they had in the past. Maybe we are moving beyond the days of teary/hysterical hair cuts. High!
• We went to the park today. The boys had a blast. High!
• Therapy. HIGH!!!!!
• This is a three day weekend. So needed. High!
• Jack is still not walking without holding my finger. I am trying not to stress, but hell if I don't want to have to take him to an 18 month appointment and have her throw Early Intervention out at me again. We only have one month left... Low.
• He is well past the minimum word count for 18 months, though. He just doesn't talk a lot. When he does, he is spot on. High!
• Due to a change in the pay schedule, I ended up getting paid two checks this month. Boo Yah! (Am I the only one who gets paid once a month? Is this a teacher thing?) High!!!

~~~

Stop by Danifred's for more Leftovers!

Leftovers on Saturday

Jack has added another word, "star", to his repertoire. As it stands right now, he is perfectly aligned for the "norms" of 16 months. I am breathing a sigh of relief on this one. I wasn't worried until the pediatrician made me feel like I needed to be worried. Know what I mean?

He still hasn't taken the official plunge toward walking yet. I have been pushing him to walk more in an attempt to expedite the process, which has had the unfortunate side effect of making him not want to walk at all if I am around him. Sigh. Got it kid. I need to back off and let you just be.

~~~

We have decided to take the big boys to Disneyland this summer. My plan is to let Jack have some quality time with grandma while we spend a night down in one of the hotels.

Then I researched pricing. Holy hell is it expensive now!

I think hope they'll have a good time and make it all worth it.

~~~

After all of that therapy drama, Sh.awn had the bitchy therapist again on Friday. I couldn't believe it. True to form, he made a huge fuss when he found out it was her that he'd be seeing. He did calm some before the end of their session, but I think that was likely because she didn't have him actually do anything.

I was furious. The office said it was a substitution they made that morning. I told them to call me if it happens again. If no one else is available besides the bitchy one, then we'd cancel both boys for the day. They just sort of looked at me with their mouths open.

I think they finally understand I am serious, though.

The oddest part was when the bitchy therapist came over to me to say how happy she is about how the transition to the new therapist is going like we have had a lovely relationship this whole time and we'll be sad to see her go. I was just...OMG, she's flipping crazy. No wonder we're having problems with her!

Again, Sh.awn was there so I didn't really get into anything, but I did make sure to point out that Sh.awn does not cry at all with the other therapist. I also told her we were excited about the change as Sh.awn really likes the new one.

Then I smiled and turned away because I am bitchy like that.

~~~

The Lance Burton version of Alice in Wonderland is on right television right now. It's ... interesting. Is.aac keeps saying that Alice reminds him of me. I don't see it. (She's like half my age, too.)

~~~

Other highs and lows from the week:

• Is.aac's paycheck was denied by our bank for lack of funds. It was all straightened out over the weekend, but something like this happening sure does shake a person's confidence in her husband's employer. Low.
• I went out to lunch with some girlfriends this week. It was so nice to talk to people about things other than the potty, Team Umizoomi, and the like. High!
• Jack is saying more words! High!
• I've had a lot of fun doing different things with the boys this week. High!
• We never did make it to breakfast last week. We plan on doing a breakfast for dinner event tomorrow night. We shall see how (if) it goes. Not a high or a low. This one is neutral.

Head to Danifred's for more leftovers.

How It Should Be

Therapy day. I wake up to stomach issues. I'm dreading going. I always do.

We are scheduled to have the bitchy therapist again (biding our time...only four more weeks until she is gone forever). I know it is going to be ugly because true to form, as the day progresses, Sh.awn's attitude steadily declines.

I'm not looking forward to it, but as much as it's hard for me, I know it is even worse for him. Everything about him is signaling that the idea of going is taxing him. He's screaming. He's hitting his brother. He is crying during quiet time for no reason at all.

The sad thing is that he wants to go. I know he does. He loves to learn and talk to people. He works hard when motivated and can be so hard working. The end result is a tug-of-war between the want and apprehension.

We get ready to go, get into the car. He's quiet while he looks out the window. I wonder what he's thinking. As we pull into the parking lot, he tells me he wants me to carry him into the building.

I take a deep breath and start with my routine. "You're going to have a great day today, Shawn! I wonder what fun things you'll get to do? What do you think, hm?"

He doesn't answer. He get sfrustrated at how slow Ja.son is. Hurry up. Don't stop. Let's go. The faster he's in, the faster he's out.

We walk through the doors and the whining starts. Then the crying. He turns on me. Tries to hit me. Tells me he doesn't want me. He wants to go back home. I get him to breathe. He quiets until we tell them we're here.

The crying starts all over again.

Ja.son's therapist is ready for him. He goes in. Sh.awn's distress ratchets up a bit more. "You're going to have fun," I tell him. He yells. He doesn't believe me. I don't either.

We wait for a few minutes. Finally another therapist comes to tell him that he isn't seeing his regular therapist, he's seeing his new friend from two weeks ago.

And like that it stops. He wants to go in. Doesn't shed another tear or raise his voice the entire time we're there. That one change makes a world of difference for him.

I peek over and Sh.awn is talking up a storm to his friend. They're working on a computer. I recognize he's doing some extensions and fine motor work. It makes me smile. I relax some and actually get to see what Ja.son has been doing for a change.

This is what it should be like every time.

Every single time.

My kid shouldn't have to have this kind of torment to come to a place that is supposed to help him. So I spoke to the office.

The transition has officially happened today. No more seeing the other therapist. It may mean a lot more juggling to make this happen, and maybe make us have to squeeze in another day, but it is so worth it to see him relaxed and enjoying himself.

He had been stagnant for far too long.

I can't wait to see how my boy will blossom.

~~~

I spoke to the new therapist today for a half an hour. He is wonderful--a bit quirky (he RUNS around the room as he adjusts to his sessions with the kids. hallelujah he can think as he goes!), but he listened to my input and is excited to work with my boy.

More importantly, my boy is excited to work with him.

This is going to a good, good thing I think. Maybe I don't have to hate Wednesdays anymore.

~~~

This is my 1200th post. I love that it is about something that brings me such hope! :-)

Failed

Jack failed his 15 month screen today because he isn't walking (he will walk holding my one hand, but not independently) and doesn't have more words. If he doesn't drastically improve this month, they want us to have him evaluated by EI. I'm sad.

As much as I didn't want to be, it seems I am still desperate for him to be typical. I should have known better than to wish for that...it's almost a given that I won't get it.

Sometimes I think I have my shit all figured out...that I am okay...but things like this to throw me into a spiral. I know it doesn't change him or anything, but I am so tired of people pointing out every weakness in my kids -- makes me feel like I've failed them and fills me with guilt.

Friday Night Leftovers

Went to therapy on Wednesday and today. Both times Sh.awn had a different therapist, as his usual bitchy one is out on vacation. (Is.aac and I disagree on how to handle her, so we are I am passive agressively dealing with her until she leaves in August. Then I am writing a letter to her supervisor outlining my issues.) Anyway, it was such a different experience. There were no tears whatsoever. I now REALLY know it was his experience with the bitchy one that was a huge factor in his behavior. As much as I know I know my kid, now I have the validation that she is just bad.

~~~
Three books read so far. Not bad for only being out of school for two weeks. I have Fifty Shades of Grey to read next. I told Is.aac that someone described it as "mama porn" earlier this evening. He practically shoved the book into my hands and turned the pages for me. lol. I think he's hoping for some residual action when I finish.

~~~

The boys made english muffin pizzas tonight. It was so cute. They both made them exactly how they wanted them, which meant there were no complaints for dinner tonight. Win!

~~~

Ja.son fell while he was in the bathtub and busted his lip open. Ugh. I think it ended up looking a whole lot worse than it was, but I do admit to cringing when he said his teeth hurt. (Cathy, my thoughts immediately went to your experience with D.) He had stopped complaining about his teeth after about an hour. Hoping we dodged that bullet.

~~~

Sh.awn is still working on the potty training. The last two days have been pretty meh, but he consisitently goes several times a day. I do have to figure out a better reward than watching Team UmiZoomi, though. He wants to see the same one over and over and over and over. I am about ready to go crazy.

~~~

The other Highs and Lows from the week:

• Jack turns 15 months old tomorrow. Wow. High!
• I learned that I won't have to teach that class next year after all. I didn't specifically ask to not have to teach the class, so that was a pleasant surprise. High!
• I had to take the boys to the pediatrician for a well visit (I needed a new script for therapy-every 6 months). Two days later the big boys have been cranky and challenging and Jack has been super clingy. Got to love when the kids pick up cooties from the pediatrician. Low.
• I'm going out to dinner with some girl friends tomorrow night. High!
• My mom comes back next week. High!

Stop by Danifred's for more leftovers!

Friday Night Leftovers

• I still have been able to reach the boys' case manager to ask wtf is going on with this notice. It is beyond annoying that I've called twice and left messages and have heard nothing. Ugh.
• I did write the appeal letter and resent all the paperwork via certified mail. I could have driven the paperwork to their office, but I decided that I still would not have any proof that I actually delivered it. At least with certified mail I have that documentation. As you can tell, I have a lot of confidence in this place. Sigh.
• I am still beyond pissed off about the whole thing.

• Ja.son woke up with a "broken" nose as he calls it. His nose was stuffy and his throat hurt. It looks like another round of The Sick is here.
• It is a little bit too coincidental that the boys get sick about 48 hours after going to school. Every. Single. Time. they get sick.
• When one gets sick, it is just a matter of time before they all get sick.
• It is getting old.
• I half-joked that I should make the boys wear face masks and follow them around with disinfectant while they are there. The more I think about it, the more I want to do it. Can't you just see me with a can of Lysol and Clorox wipes? lol. That wouldn't look the least bit odd, would it?

• Work has been pretty hard. We were notified this week there are going to be a lot of changes next year. The running count so far: new principal (ours sent to another school), new assistant principal (promoted to principal at another school), new librarian (forced to retire), new head custodian (fired due to shady business), and the entire kitchen staff (also fired due to shady business). I have a hunch that there are at least three or four other people on the chopping block. Most of these changes were needed and long overdue, but it is sad to see people loose their livelihoods even if it's because of their own stupidity.
• One frustrating thing is that there is a lot of cloak and dagger, secretive, 'don't tell anyone what is going on' kind of stuff occurring right now. I am privy to insider information on a lot of it (because of who I am connected to and my position there), and well the whole way things are happening leaves a bad taste in my mouth.
• While I am not opposed to change, and for the most part see it as a good thing, I already have the sense that this will somehow create more work for me. I have enough work to do as it is without adding extra crap into the mix.
• The people I work with do not do change well.

• I'm thinking about dyeing my hair dark brown. I'm chicken, not because I'm worried about my hair, but because I would also need to dye my eyebrows. That part makes me nervous. lol.

I Swear It's a Conspiracy

Be warned. This is another curse filled vent.

Today I got a notice in the mail saying that C..C..S has now denied the boys services (read therapy!) because "I" failed to complete their requested documents. That is bullshit, of course, because I sent the documents in last month. I am anal about such shit, actually.

I have copies of all the forms, but still. Now I have to go to added trouble of writing a fucking appeal letter describing why this judgement is in error. While I don't expect there to be an issue in the long run, (good grief there better not be or you'll likely read about me in the paper) it is just another thing that I have to do because someone somewhere didn't do their fucking job.

Again.

Fuckers.

I suppose I could just walk the paperwork down to the office and input our information into their computers myself. Maybe that would save a step. You know, do the work upfront rather than after the fact.

Ugh. I am so annoyed I could just spit. Or throw things. Or cry.

Sigh.

Add this letter to finding out that I am going to get yet another principal next year (I think this will be the 20th admin change while I've been at this school) and receiving a jury summons today...and well, I am glad this day is over.

Mostly Wordless Wednesday - Therapy Pics

This first picture is of Sh.awn using his walker during physical therapy. The highlight of his therapy sessions is to go into the stinky bathroom. The more we play up how he shouldn't want to go into the STINKY bathroom, the better it is for him. lol. I don't know why he's chosen a room with a toilet as his motivation, but we'll take whatever works for him. He is such a BOY. :)

He is hysterically laughing here...

The women with Sh.awn in his picture are his interim therapist (his regular on maternity leave) and an intern who is sitting next to him. In this picture, the intern looks a bit like me. Weird.

Here is Ja.son during his OT session today. He's making ice pops. He saw the freezer forms while he was riding around the therapy room on his bike and begged to make them during OT. His therapist was kind enough to oblige. (They made a deal that he could make the pops if he'd let her put some kinesio tape on him. As an aside, I am getting pretty damn skilled at slapping that tape on my boy in under 10 seconds. His therapist not so much. Ahem. My resume continues to grow...) It did take a bit of talking to get him to accept that he couldn't eat the ice pops today, though.

Concentrating on his pops...

The boys continue to work very hard in therapy. We are so proud of them!

Have decided the OTs can officially go fly a kite. I have issues with the goals they wrote. It is stupid to me to have something as a goal for the next 6 months if they've mastered the skill now. They won't/can't/who cares why if they won't change them. Sigh.

The PTs on the other hand, they are amazing...

Jason trying out "crutches" for the first time.
He totally rocked it with them!

P.S. I was a good girl and didn't get all pissy. I don't think I'll be labeled difficult either. I was calm. I stated my points. They said some nonsense and that was it.

Where Is My Zen?

An unfortunate side effect of these stupid letters is the strain it puts on our relationship. True to form, we have been bickering non stop since we got them yesterday. It's old, really, but we both get caught up in the emotion (hurt) and have trouble stepping back and finding our zen.

Instead, I chuck zen out the window while firing back with both barrels. He gets into his nitpicking mode and has something to say about every.single.thing.I.do. It's not exactly great for our relationship.

Worse, it makes me feel even more shitty.

Sigh.

I know that what is said on those evaluations doesn't change anything. The boys are still amazing. They still do what they do--assessments are not. I still have great expectations for their futures.

Still, I am very sensitive to someone criticizing them for what they have no control over. This brings out the fierce momma bear. If I can't attack the people who critique them, Is.aac ends up being the surrogate. (and I for him)

And I hate that I started to trust that these people would help us, only to feel blindsided by the fact that we truly are alone.

AGAIN. You'd think I'd learn by now.

I am still wrestling with how to address my feelings over the evaluation. I could suck it up and just let it go. If I am honest, this is my fall back solution. I hate causing waves if I can avoid it. I'll be pissed and uncooperative when they want information/something (if only in my mind). To be sure, I will never openly say anything to these particular therapists without carefully weighing my words. I will also be very mindful of everything the boys are doing with these therapists and will ask many questions as to the relevance of certain activities to the stated goals. My days of just letting therapy take its course with these therapists are long over.

I could voice my concerns about the inaccuracies I saw and the misquoting of my words, but I am not sure how that will really benefit the boys/us. I certainly do not want my actions to affect the boys' therapy sessions adversely. And yes, if they were professional, it wouldn't, but I see first hand how the kids of pissy* parents get treated. (Although I try not to let what parents do/say affect my relationship with the kids, I am only human.) I think crossing the line to become "that" kind of parent would be very easy for me at this point.

So I don't know. I have until Tuesday to decide how I want to handle this.

*Spell check does not like the word "pissy" and wants me to change it to "pussy." The 12 year old inside of me is still giggling. It's the little things I guess.

Every 6 Months

Every 6 months or so, I get another reminder--as if daily living isn't enough of one.

Your children are delayed.

Your children are not normal.

In essence, every 6 months I get another "your children suck and can't do anything" letter from whichever agency is in charge of picking out all of their struggles at the time.

And when you have twins, you get the fun times two.

Sigh.

We got the OT evaluations today. Neither boy is particularly happy with their OTs, so you can imagine how them not wanting to work with these women translated on paper. Plus, the boys have only been in therapy since late September, which meant they have had less than three months to work on the goals established for them in June.

I read through these forms and got increasingly more angry. I was misquoted and saw my words warped into unintended meaning. Along with that, there were flat out inaccuracies on which skills the therapists said the boys can't do, even though we KNOW they can do those skills. I think I shook my head "no" to at least one thing in pretty much every section.

Again, I feel like I have to  be very careful when I answer questions the therapists ask. Like I have to watch everything that happens while we are there. Like it isn't safe to let Is.aac take them because I can't know what is going on while the boys are there.

But more than that, it is just inherently WRONG to willingly take my children to a place where people are payed pick out every single tiny weakness they can find in my kids to justify the need for therapy.

It hurts my heart to continually have everyone shove it in my face (in the guise of "helping") that my children are different.

Ugh. These feelings and hurts...every time I think I have a handle on all of this, something happens to knock me back down. Constantly picking yourself up from the gutter gets old.