Scheduled

Updated: They caught their error and changed the date to the 6th, which is a Thursday.

The next IEP meeting is set for the 7th. (Way to push it out as far as you could, school district.) The teacher emailed tonight to say she got word today. I'll get our notification letter tomorrow. If I wanted to be snarky, I'd comment on the fact that this date is on a Friday when my email said we were available on Tuesdays or Thursdays. Sigh. For right now, I'm holding my snark in unless they provoke me.

Anyway, the teacher also asked what I thought she could do to support us. I told her just talking about her observations since the new aide has been transitioned in should be more than enough. That is pretty strong evidence right there. The principal also has commented on his dramatic change, and she'll be there, too.

Bring it.

I'm ready to fight.

Leftovers

We are sick again. We have averaged a cold a week since August. I am so over the boys being sick. I'm so tired of me being sick. It has been horrible. Thinking about the possibility probability of this continuing until the end of our cold season in mid April makes me want to cry. Sigh.

~~~

In the midst of all the stuff we have going on around here, it looks like my employer is going to drop our health insurance July 1. Our only options will be to go to Kaiser HMO or go PPO. This kind of switch will mean having to go to ALL NEW doctors and specialists because none of the doctors we currently see are Kaiser doctors (obviously). The idea of having to go through their histories over and over again and dealing with people who do not know us or our issues makes me sick to my stomach.

Sure, we could do PPO, but the prospect of an emergency shunt repair, and it's minimum $50,000 price tag, scares the living shit out of me. How can I go that route in good conscious when the knowledge that there will be an issue at some point, it is just a matter of when?

Rock, meet hard place.

Sick, I tell you.

~~~

Ja.son did this tonight! Whoot Whoot!!!!!!




His gait isn't the best, but he's doing it all by himself!

~~~

I had my students write haikus this week. I had to laugh when I got this one:

Oh dear Ms. (my last name)
your existence is like a light
brings us life at school

Too funny. Trying to suck up to the teacher much?

This is a really fun group. Very bright. Very immature and chatty, but they do work for me. They test me, but I enjoy them.

I am also trying to convince this class to create a dance routine. I asked for lots of jazz hands. Told them it would make my day. I think they're contemplating it. LOL.

~~~

Stop by Danifred's for more Leftovers.

Day 7

My love affair with the boys' teacher continues. You guys, I am so, so grateful this woman is in their lives. Seriously.

She emails nightly. She send me pictures. She tells me my boys are amazing, even during the really difficult days.

She is awesome (and obviously brilliant because she likes my boys)!

~~~

I got a response to my letter to the district. The boss of the person I had been dealing with replied Tuesday morning. She apologized for not telling us that the person was hired and what the plan for training/transition would be. She ended by saying she was working on scheduling the meeting we asked for...

So, I guess that is good.

I was pretty clear in my intentions for the meeting: 1) we are looking to avoid a future situation of a long line of different aides working with our son (limit who his subs are), 2) we plan to push to include transition/overlap time between aides when changes must occur, and 3) we want to receive written notification when major changes to staffing will occur.

Seeing how well Sh.awn has done since the aide madness has ended has made me even more adamant that these things must be included in his IEP. Must. There can be no alternative.

He has had 6 full days now without a single issue at school. The teacher has raved about him every single day. She's said things like, "Today was Shawn's best day EVER!!! I don't even know where to start..." this week. The principal even called to say that she was amazed at the change in him, it has been that significant.

Not only that, he has been a changed kid at home, too. He has been the Sh.awn I know and love again!

To top it off, all this has happened and he is sick. You can tell by looking at him that he doesn't feel well. Still, he has been a rock star.

He went from a kid with a referral to the county behavior specialists to help manage his frustrations/outbursts, to a kid who has not raised his voice in 6 FUCKING days at school. He went from being so difficult at home that we were all miserable to being able to count on ONE hand how many times he has gotten into trouble at home in an ENTIRE week.

Oh, how my poor boy suffered. I will not allow that to happen to him again. Ever.

Having consistency and someone who understands his needs has made all the difference. (The new aide has been fully transitioned in. The old aide, D, is still there, but she is not directly working with Sh.awn at all at this point. She hasn't done much more than observe for the last two days, and she still has two more full weeks left in the class to "train" the new aide.)

I think I'm starting to breathe again, too.

Day 2

Today was day two of new permanent aide, R.

It was a very rocky start yesterday, complete with an epic meltdown for my boy AND an unexpected fire alarm. Poor Sh.awn didn't know what to do with the return of old aide, D, and he was not very impressed with the new aide either.

How can I blame him?

He and the both aides limped through the day. It wasn't pretty by any means and from what I understand, there was a lot of him saying no and refusing to do anything mixed in with the small spurts of work. He was exhausted when he got home, which led to us being the focus of his frustrations all evening. He could not be pleased. In the end, we threw cars into trash can for the last hour before bedtime, his tension easing ever so slightly with each crash.

My heart ached with guilt that I couldn't do more to help him adjust.

I dreaded hearing about how today would go. Although I refreshed my inbox like a woman obsessed, anxiously awaiting word from the teacher, I was so worried that today would be even worse than it was yesterday.

"R is super good! She has experience oozing out of her and she's working hard to build a bond with Sh.awn. D took more of a step back today and let her do a lot. If something was brewing, she was there to support, train, and take the lead. Today was the best day Sh.awn has had in recent memory... perhaps even before vacation. HE WAS SOOOO HAPPPY!!!!"

A good day! I'm so relieved. I even have guarded optimism that Tuesday will prove today was more than a fluke.

I'm not ready to be excited, but there is hope now.

And anger.

There is lots of anger.

The fact he rebounded this quickly proves what I already knew--give my boy structure and continuity, and he can and will flourish.

No reply to email 3 yet. Fucking bastards.

Progress and Not

So, when we last left our kinder/IEP drama, the district had yet to respond to my second email. Shockingly, or not, they still haven't responded to me, but they* did meet with the boys' teacher and her union president. (I must again profess my love for their teacher. She is wonderful!) The teacher was able to nail down some very good things for us. The district agreed, both verbally and in written format, to a number of points that will make things easier for both the boys. The district office told her that Sh.awn's new, permanent aide will start work on tomorrow. Along with her, the aide, D, who was taken from him after we signed the IEP is coming back and will work with the new aide to minimize stress on Sh.awn while she learns about him and his needs. We have daily access to D for a guaranteed minimum of three weeks with the understanding that we can keep her there longer should we need to. (I don't think we will even need her for the three weeks, but holy hell I'm not going to say that.) There were also some other problems the teacher was able to finally solve in this meeting.

This is good news - Sh.awn can finally get the stability and continuity he needs and deserves.

Unfortunately, the district's lack of response to me has led me to write email number three. (Document, document, document everything.) I was more than upfront in letters one and two with my expectation that they keep us informed with the status of Sh.awn's aide search. We've had no official notification that the new permanent aide has been hired, much less that she is even going to start tomorrow. All we know has been relayed to us through private email conversations with the teacher.

I've asked for another IEP meeting to include an amendment about the notice for staffing changes. I even went back and reviewed our notes with the intention of counting and including the number of aides he's actually had in the 101 days of school. I knew it was a big number, but in all honesty, I was shocked.

14.

My poor guy has had 14 aides. That averages out to a new aide every 7-8 days.

I have dates and names of all of the aides he's had thus far, and I included them in my email. And you know what? It was so sad to write all of it out. I can't get over the ridiculousness of that number.

I am pissed me off to a whole new level, which based on how pissed off I was before, seemed pretty damn near impossible.

The way I see it, there is no way that they can argue that this number of aides is anywhere close to okay. So I am going to demand and aim high, so to speak. Should they refuse to amend, I'll push forward with an advocate as I stress the district has proven they are uninterested in Sh.awn's overall wellbeing.

The fight continues. Wish me luck.



*The teacher met with the direct supervisor of the woman I've been dealing with all this time. I again included this person in my request for another IEP meeting. I was very upfront about my displeasure in the lack of response from the bitch woman I've been dealing with all this time.

Friday Night Leftovers

Yea, the Olympics are here! Here's hoping I'll be able to actually watch it all.

~~~
The school battle continues. There was no response to my stronger worded second letter. Perhaps she took issue with my statement that failing to find a permanent aide for Sh.awn when she continued to stress that the one we had was temporary was "gross negligence" on her part? I don't know. That just prompted an even stronger worded email that went out today. Words like "advocate" and "meeting again to amend his IEP to include parameters about future changes" were included.

The teacher also wrote an email on Sh.awn's behalf. She was invited down to the district office to discuss her concerns. I think that was supposed to happen today, but she hasn't emailed to confirm that yet. (She is a rock star. Seriously. We got so lucky with the boys being placed in her class!)

~~~

I am sick again. Sh.awn is sick again. I'm just congested and have a pesky cough. He's throwing up. (I hate it when he throws up. It totally triggers my PTSD.) Me thinks stress is wearing us both down. Well, stress and those mutant kinder germs.

~~~

Here's a dream for you to analyze. For the last week or so I've had nightly battles with a little girl. I don't know who she is, but no matter where my dreams take me, she is there. She's a small girl, the size of a toddler, but I get the impression she is older than that. How old, I'm not really certain.

Anyway, as I said, this little girl has a knack for finding me no matter where I am. She is persistent and won't leave me alone. Generally, I start by telling her to go away and I move away. Each time she comes back, I get more aggressive with my response--I shove her away. Then I squeeze her hands. I leave the room, go to other locations to try to escape her. She comes back. Before too long, I am really trying to hurt her so she'll leave me alone. Still she comes back. After what seems like forever of this, I manage to lock her into a room or a closet. Almost as soon as she's finally confined, I wake up.

Fun times. Needless to say, I am not sleeping well.

~~~

On a lighter note, we got our staff pictures today. This year we took one together. I searched for myself, hoping that I wasn't forever immortalized making some ridiculous face. (I hate taking school pictures.)

"That's funny," I thought. "I could have sworn I was in the back row." I looked again and couldn't find myself.

Then I remembered I'm no longer blonde...

And, yeah, I was that brunette who was standing right where I thought I should be. I'd call it a blonde moment, but I guess I can't do that anymore.

~~~

Nothing much happening on the unemployment front. Sigh. Trying to stay zen.

~~~

The boys have 100 days in school projects to do this weekend. I wish I had known they'd have to do this kind of thing a long time ago. I would have definitely started much earlier. As it was, the parent note went out yesterday and the projects are due Monday. My boys have chosen this time to exert their independence from each other and have declared that they CAN'T DO THE SAME THING, MOM!

How dare I even suggest such. Silly me.

Kill me now.

I've wracked my brain trying to come up with something for them to do that didn't involve gluing 100 different things or writing or you know, doing too much of anything that would involve a lot of fine motor work. (Plus, I don't really want to have to work on these stupid things all weekend long.)

I think I've got something brewing. Wish us them me luck. ;)

~~~

Stop by Danifred's for more Leftovers.

Waves and Such

I've reached out to several friends I have in the education world. Although I wouldn't have necessarily thought so at first, I am blessed to know quite a few very knowledgeable people in a wide array of fields, and when asked, they all readily jumped in to help. Mostly that was through giving me information and connecting me to others who may be able to help, but still, I quickly found that I was not exactly alone in this fight to get what I think is best for Sh.awn. People wanted to help any way they could.

 

I am grateful.

 

One of my friends commented that she didn't know how I do it, that her son was upset about going to school and cried in class for a week. She said she almost fell apart with worry and heartache. "This can't be easy for you," she said.

 

It didn't help when that stupid online quiz that asks "What is your parenting style?" told me that I am "Overwhelmed." You ain't kidding, stupid quiz. I am.

 

It is during times like this when I really question how strong I am. Frankly, all I want to do is curl up in a ball and cry. I don't, obviously, but that doesn't mean I don't want to at times.

 

My stomach is in knots, my digestive track may never be the same again, I struggle to shut my mind enough to even sleep at night and there have been some pretty heated conversations between my husband and I over all of this (he didn't know what to do and thought I was overreacting originally), but I am trying to direct my frustration in a way that will get Sh.awn and the rest of us what we need.

 

For me, there is comfort in action. When things are taken completely out of my hands, I struggle. The mere act of sending the boys to school and not having direct contact with that process outside of homework and emails to the teacher has been really hard. But, I try to focus on the fact that even though it may seem otherwise a lot of the time, there are good people out there (of which the teacher is included) who do care about my boys.

 

But this kind of situation reminds me that there are so many other parents who don't know what to do when things like this happen. They don't know they can fight back. They are pressured or intimidated into doing what the district says. It makes me angry to know if the district is willing to do something like this to us, then they are doing this to other kids/families, too.

I can't stop thinking about those other kids...those other families of kids with special needs. What do they do when they meet resistance? I know I can fight for my kids, and I have the expectation that with determination (and probably some sweat and tears) I will ultimately be able to make things better for my boys, maybe not with this issue but definitely overall.

 

As uncomfortable as it is for me to make waves, this is what I need to do to help make things better for my kids. I know that, so I do what needs to be done. But, I guess there is the bigger picture--maybe the other kids in the district need me to stand up when I see something is wrong, too.

~~~

For what it is worth, the first email I sent went largely unanswered. I replied with a much stronger worded email which included the IEP accommodations that this decision blatantly ignores.

I am dealing with the manager of special ed for the district. I also cc'd the superintendent and the associate superintendent (the manager's direct superior). When she replied, the two superintendents were conveniently left off of the reply, suggesting that I may have hit a nerve with her. I, of course, was forced to bring the sups back into the loop with my second email.

In the long run, I may only succeed in making this person sweat (and ultimately changing his IEP so it doesn't happen again). I have a strong sense of urgency...each day there is no resolution, the longer Sh.awn is dealing with this upheaval in his world.

We shall see what round two brings.  

Technically

It's interesting what happens when things are based on that word "technically."

Technically, I had eggs and milk for dinner. So what that those eggs and milk were part of a delicious cake and ended up with little to no nutritional value added to my diet?

We are now in another battle with the school district. Less than four days after we signed the IEP, the school district decided to pull the aide Sh.awn has had for the last several months, the one who has helped him overcome some pretty challenging physical and behavioral obstacles, and move her somewhere else. They did so without any warning on our part, and didn't even let Sh.awn or the teacher say goodbye to her.

Poof. Just like that, she was removed from his life forever.

The district is now saying this aide was always "temporary" for Sh.awn (news to us) and she is needed elsewhere. The district's solution is to give Sh.awn a temporary aide, one who does not know him at all, for "a few weeks" while a "permanent" aide who they "think will be a good fit" completes necessary paperwork and is hired. If the old aide was always considered "temporary," then why was no permanent replacement hired? It isn't like they didn't know that one would be needed. Why take the one he knows before a replacement has been found?

It has even been suggested that Sh.awn's teacher take time away from her entire class in order to train the current temporary aide. (Not her job at all, and frankly, as a teacher this upsets me on a whole other level.) I can only guess that she would have to do that yet again when the permanent aide has been hired.

How can that be fair to Sh.awn, especially when it is well known that he needs structure and routine in order to thrive in his academic setting, to force him to undergo transitioning through two new aides? How can that be fair to the teacher or the rest of the class?

This is going to be a huge setback for Sh.awn, who will feel it the most, and also for all of the students in his class. We have the unique perspective of seeing both sides of this issue. We see how it impacts Sh.awn when he does not have consistency. Behaviors that had been eradicated for the most part, have now returned and will likely continue for the foreseeable future without a consistent permanent aide to help him succeed. We also see how it impacts Ja.son, along with the other students in the class, when the teacher is called away from the class to help an aide learn how to help Sh.awn. Ja.son's education will be disrupted as well.

It is behavior like this that gives schools and school districts a bad name.

Technically, the district has provided an aide. Technically, that is all that is required of them.

Technically, this is all just shitty.

The adults responsible for moves like this should be ashamed of themselves.

Sigh.