Ready for 2016 to Hit the Road. Bring on 2017.

Tomorrow my mom goes in for the start of her third round of chemo. She does as well as can be expected, but she is pretty miserable from the side effects of all the meds they give her.

She had a PET scan last week that showed DRAMATIC improvement. Looking at the difference between the scan from a few short weeks ago to now are breathtaking. Her body was riddled with tumors before she started chemo--more than I even imagined. The sight of those images made me ill. Now, thankfully, tumors that had blackened her internal organs on the first image are nearly gone. Her lungs are clear. Her stomach looks to be pretty much clear. Her liver still has a small spot, but overall, the difference is striking. It really is an incredible sight.

Her oncologist was beaming. "Just what I expected to see!" he declared.

I am slowly starting to exhale and a tiny bit of the dread has lifted. I'm still guarded, but there is hope there, too. My mom, however, is still in the thick of bimonthly injections of poison and will be until the first week of April. She had hoped that a good scan would mean a shorter course of treatment. It was hard for her to hide her disappointment when she learned that wasn't to be the case. And, well, my heart hurts for her.

~~~

With my mom being ill, it has fallen on me to coordinate and execute the holiday festivities. It was definitely a challenge for a number of reasons, but mainly, I just haven't been in the mood for celebrating this year. Plus, I was reminded why I do not care for cooking.

Thankfully, I managed to pull it off while not poisoning anyone in the process. I'll call it a win.

~~~

At the start of December, my husband received a frantic call from his brother. Their mom was missing. She had never arrived to a destination that should have been a 5 minute drive from her house. They did end up finding her some four hours later. She was in a city 30+ minutes away in the opposite direction of where she was headed. She had totaled her car in a single car accident.

The scariest part is that she had no idea why she was there or how she got there.

Fast forward to a "family meeting" that included my husband and his brothers, their mom, and their aunt (mil's sister) in which a letter from a doctor was provided that was dated TWO years ago stating that my mil showed symptoms of dementia. It was the first time any of the brothers had heard that news. The aunt said, "oops, sorry" about not telling them, and that was that.

So...yeah.

The boys are now cycling through taking her dinners and scrambling to get info that has been slow to come/non existent. The aunt has not exactly been forthcoming with information. (She took mil to the doctor and mil got two new scripts since they all had their meeting, but the aunt didn't tell the boys about it. I actually found out through another source which led to my husband asking a direct question about. SIGH) The mil is showing some concerning behaviors, which isn't looking great. She's not even 70. :(

This is yet another situation in which I can only do so much. I'm tired of these situations.

~~~

We have finally squared away oldest child's IEP. It only took two months and 4 meetings totaling over 9+ hours of discussions to get there, but hey. One has been signed that I can live with. Oh, and as a bonus, they finally delivered on an accommodation (adaptive keyboard) that was written into the IEP in May...of 2015!!!!...just before break. How awesome is that?! (eye roll)

I am frustrated with the whole lot of the people at their school. I know they would rather I disappeared. I'll say it again. If a school/district can be this inept when they KNOW I am an educator and that I KNOW what they should be doing, I shudder to think what other parents without an educational background goes through.

~~~

But you know what? I have these guys...



They're pretty awesome, too. :)

~~~

So, needless to say, I am over this year. Let's bring on 2017, and with it bring on a year of health and happiness for all of us.

xoxo,
Stacie

#MicroBlog Monday - The Same But Oh So Different

The school is the same. The aide is the same. The kid is the same aside from some minor maturation ten weeks can give a 7 year old.

The teacher is new. The class is much more challenging. The expectations are so much higher they aren't even really on the same continuum.

And yet, the experience is oh, so different.

If you would have listened to the teacher from last year, he should be falling apart, not thriving. She made it clear she thought I was delusional by suggesting he was bright. (I can't tell you the pleasure I get from knowing this must be annoying as hell to her.)

If you would have listened to the teacher from last year, the picture painted of my boy would leave you thinking there was little hope.

I fought back. A lot.

Thankfully, someone who could make decisions had listened. And we were blessed with another amazing teacher.

One who pushes. Expects. And more importantly, one who cares.

It has made all the difference.

Everything has changed.

I've always known that teachers can make or break the experience for a child, but now I know. Living it made me feel it in a way I never had before.

Go to Mel's for more #MicroBlog Monday posts.

The Eve of the New School Year

Can you believe it is already that time again? Summer is over.

The boys start the new adventure of second grade tomorrow. Clothes are picked out. Lunches are waiting in the fridge. Backpacks are filled with supplies. The sign is ready to capture their first day excitement and looks...

But we're not ready.

We are not ready to go back to school and schedules and early bedtimes and homework.

We are definitely NOT ready for our summer to end.

I'm not going to lie. There was a little bit (or a lot) of sad mixed in with the excitement as the boys headed off to bed.

We're not ready because we've thoroughly enjoyed this summer.

While we've done quite a few things this summer, in reality, our summer has been fairly unstructured and relaxing -- something I think we all really needed, something we're not ready to give up.

So yes, we are going to really miss the summer.

We learned today that the boys will have our desired teacher next year. She is upbeat, energetic, and caring, exactly what you'd expect an elementary teacher to be and the complete opposite of what we had last year.

Please let this be a better experience this year. (I don't think it could get much worse.) Fingers crossed!

#Microblog Monday

Today the big boys go back to school after a three week vacation. It's been a nice break, but unfortunately, it's been long enough for us to get out of our routine. Yesterday at lunch we talked about finally getting the chance to go back.

J is nervous; his stomach hurt last night, a symptom of his worries. He was almost as nervous as he was before the start of school. Thankfully, he seems a little better this morning. Excitement has mixed with the nerves now.

~~~

Sh.awn was visibly upset yesterday while we talked about returning to school. He knows he'll be working with his new aide, and he struggled with the emotions of the new situation. For the first time, S's old aide, whom he LOVED, will not be there today.

"But why does she not want to be with me any more?" he asked. "Is it because I wasn't good?"

Oh man. Talk about ripping my heart in two.

Of course I explained again that this change had nothing to do with him. I even reminded him of his new aide and talked about how nice she is. He said he understood, but still.

My heart aches. My poor boy.

For him, this change is nothing less than a break-up, one in which he had no idea was coming until it happened. I'm sure it's hard for him to take it any other way than it was something he did when things like 'higher pay' means absolutely nothing to him.

All he cares about is that a person he loved left him.

He didn't say much about it when he woke up today. I didn't bring it up with him either. I know he knows, and I don't want to set the course of his day negatively because I upset him before it started. I simply kissed him on his cheek and wished him a good day like I usually do before I head out to work.

I hope that his day goes well. I hope that he is reminded how kind this new aide is. I hope he quickly learns to love this aide. It won't replace the loss he feels about his old aide leaving, but maybe it will help ease the sting.

Stop by Mel's for more #Microblog Monday posts.

Yet Another Change

There's more change ahead for my boy. His aide, who was instrumental in helping him overcome some pretty miserable days at school last year, will be leaving him this week. There was no warning for us; the replacement aide was there this morning ready to shadow for a few days and then take over.

I'm frustrated. Upset. Hell, I'm angry.

I'm so sad for my boy. He loves this woman.

He'd just got his footing this year. We'd finally found the balance between meds, support, and structure that allowed him to thrive. And now?

Now I feel like his tentative hold on the success is slipping away.,,

I can't fault her for going--she's moving to a position with better pay and more benefits, and I know she has her own family to support.

Still, I can't help but feel like we've (and yes, this is a whole family kind of thing) been abandoned.

I hate that my boy so often gets the rug pulled from under him. Yes, he is resilient. He will survive this transition like he has all the others. But why does his resilience have to be tested time and time again?

Sigh.

I'm trying to be positive in spite of what I write here.

I want this new aide to be even better than our wonder aide who is leaving.

I want this to work for him because we have no other choice.

It has to work.

Please let this be a change for the good.

Weekend Leftovers

This week brought both my mom's and Is.aac's birthdays. We had a quiet celebration at our house yesterday. Cake, ice cream, presents, fun, and laughter...who could ask for more?

Bonus is after preparing the house for people to come over, now my house is clean. ;)

~~~

With all of the appointments we've had for doctors, one of the ones that scares me most (which says something) is neurosurgery. Thankfully, the doctor finally called yesterday and said everything looks good for both the boys. Relief.

~~~

One of my childhood friends is pregnant with her first right now--a single mother by choice. I am beyond happy for her, and I can't wait to go to her shower on the 25th.

Coincidentally, her due date was the due date I was given with the pregnancy last year.

~~~

I asked for a meeting with the boys' teacher. There were just a lot of things that were happening that were rubbing me the wrong way. We met on Thursday.

Despite being told about some of Sh.awn's unique needs, she conveniently "forgot" (actually she "forgets" a lot of things) and wasn't putting the strategies we know he needs into use. I reiterated some things to her, so I hope that she has a better understanding of what needs to happen to help Sh.awn succeed.

I'm just going to have to accept that I am not going to like her. She isn't a warm and fuzzy kind of teacher, and she's more than a little abrasive in her speech and mannerisms. If I had to guess, I'd say that I'll be forced to meet with her regularly. She just gave me that kind of vibe.

The fact that I'm not a fan of her is one thing, but even Is.aac, who brushes things off easily, has said more than a few times how he dislikes her. Le sigh.

~~~

Stop by Danifred's for more Leftovers!

Friday Night Leftovers

Sometimes, the only way I survive is by staying on the surface of my thoughts. Anytime I think too deeply about something when I'm in survival mode, I tend to get lost in the emotion. I didn't have time or the energy for that so I fell back on my MO -- I put my head down and plowed forward.

Hence the no writing here.

The best news is that boys ROCKED kinder. They both are at standards or above in all academic areas except one area for Sh.awn. (Take that stupid psych. I told you your tests were wrong.) I am one proud mom. :)

We also had an informal transition meeting with all of the first grade teachers. It was a way for them to meet us and us them. We won't know for sure which teacher will be the boys' because their district hasn't finished their position rounds (which ends much later than in my district). I felt okay about all of them but one. She just gave me a vibe that made me uncomfortable for some reason. Please hope that we don't get her, or if we do get her, that she just gave me a bad first impression.

School got out for all of us last Thursday. I dragged myself off campus and have been in a serious post school year haze since. I swear I fall asleep at the oddest times and sleep like a rock when in bed. It's been a week, and I am just now starting to feel slightly more human.

It has been interesting to be on summer break and have Is.aac here. It has come in handy in that I have been able to sleep a lot more than I would have, but it comes with its challenges, too. We've already managed to annoy and frustrate each other daily. (OMG he's always here. Why is he ALWAYS here?!?! I say that in the most loving way, of course.) That doesn't bode well for the rest of the summer.

I am still trying to sort out some sort of summer routine for us. The boys, especially Sh.awn, need to keep some of the structure that school gave them, but I don't want to exactly be ruled by a clock or a rigid schedule. I've already incorporated summer "school" into the day, but I haven't decided how I want the day to go beyond that. Not having anything planned is not going to work, I already know that. Let's just say I've already heard the dreaded "I'm bored" statement. Sigh.

Stop by Danifred's for more Leftovers. :)

Weekend Leftovers

This week is the deadline to choose our insurance plan. Based on the economics, especially now that Is.aac is out of work, I think we are forced to try out the HMO for the summer. I did go to the insurance fair the district offered and spoke to a woman in their pediatric division and was assured that they have people to meet our needs in all of our specialties.

I am not exactly happy with the decision, but there are not many options. My plan is to do all of this year's summer appointment (ped, neurology, neurosurgery/CT scan, possibly explore new walkers) through them and "meet" their doctors.

I am sad, though, to have to leave the doctors we have now. I trust them. They understand us and our needs. I hate that we don't really have much choice.

If I don't like the new HMO, it's open enrollment again in September (for November 1 start) and I can switch back. It will always be an economic gamble if we went with the PPO option, but I will do what I need to do if needed. 

*On a side-note, it does not make me feel all that great to hear all of this noise about a pharmacy strike looming for our new HMO. :/

~~~

Latest email from the teacher...

Can you believe how far we've come with these boys of yours? There has been so much progress and it has been so exciting to be a part of it. I could tell by their answers [on their teacher appreciation questionnaire] that our day-to-day has impacted them and that makes my heart smile! 

 

I love her!

 

I asked her if she's going to move to first grade because I don't know what we'll do without her. I was kidding. Mostly. Alas, that pesky issue of meeting the school's needs is going to prevent that. Bummer.

 

~~~

 

It had been hellaciously hot last week.

 

I know you guys are probably rolling your eyes at me, but in my neck of the woods, it is a rare day when the temp is in the mid 80's. It is even rarer when it hits 90's. I live two minutes from the beach, so it just doesn't get hot. The last two days, though, we were in upper 90's and broke 100 degrees.

 

My classroom does not have air-conditioning. With every single window and door open, it was still 93* in my room at 1:00. My document camera/projector even quit because of the heat. It was brutal.

 

I am so, so relieved that temps should be back to normal for us this week.

 

~~~

 

I got a tiny bit sunburned this weekend. I managed to miss a two inch by 1/2 inch section of my left upper arm when I was applying sunscreen. It's an angry red. Fortunately, other than when I directly touch it, the burn itself has been no problem.

 

The real issue is that I have hives. They started right on the sunburn and radiated out from there. It is the oddest thing.

 

And they itch like crazy!

 

~~~

 

5.weeks.left.thank.GOD.

 

~~~

 

I bought tickets to take the boys to a Se.sa.me Street show on Saturday. Now I'm wondering what the heck I was thinking.

 

I am really nervous about it. Am I the only one who breaks out into a sweat at the thought of taking her children out into the real world? I do take them out and all, but holy hell the stress involved in trips like this wears me out. The mere thought of trips like this wears me out.

 

This is clearly a case of the spirit is willing, but the body is weak.

 

 

Stop by Danifred's for more Leftovers. :)

Weekend Leftovers

*This is posted on my iPad, so forgive any typos.

~~~

I am out for spring break! Yea! Here's to 14 glorious days off!

~~~

I started my break doing laundry, cleaning my house, and hosting both sides of the family. This will sound awful, but I am glad to get all of that out of the way. Now I can just relax and focus on us.

~~~

Let the boys loose outside this afternoon. They had so much fun getting dirty. :)

Yes that is my poor, dead grass he's standing on in this picture. Sigh. Drought = not good for grass growin'.

~~~

I found out that Sh.awn's new aide is the parent of one of my students. It did not help that I found out this little nugget of information through an email from her to me asking what her daughter could do to improve the F she earned. Sigh. Thankfully the daughter has now improved said grade to a B and we all continue to act like no one knows how we are connected.

Can I just say that this is totally awkward? Because it TOTALLY is.

~~~

The boys got their report cards on Friday. It's comments like these that make a mama proud:

"Sh.awn is working toward meeting or exceeding kindergarten standards. Sh.awn demonstrates strength in blending sounds to form words and reading. We will continue to encourage more challenging texts. Sh.awn also enjoys math and numbers. Sh.awn's progress this trimester is remarkable. Keep up the great work, Sh.awn!"

and

"Ja.son is working toward meeting or exceeding kindergarten standards. Currently, Ja.son is showing tremendous growth in reading, math (number sense), and verbal skills. In the third trimester, we will continue to find ways to push Ja.son beyond kindergarten expectations."

Not too shabby for my 28 weeker preemies, now is it? :)

They have only 43 more school days before they will be officially first graders. Blows. My. Mind.

~~~

Stop by Danifred's for more Leftovers.

Done

We had the IEP meeting on Thursday. The district agreed to every thing I asked for without even batting an eye. Things I didn't even formally ask for were added to the amendment "to make sure we get these things done." Um...so yeah. It all went as well as I could have hoped (although I reserve my final judgment for when I get to see their plan for dealing with sub aides) which was a shocking surprise. It was easy, calm, and straight forward. I could almost go so far as to say that it was not unpleasant at all and was wrapped in only about thirty minutes.

This is going to sound strange, but it annoys me at how much noise had to be made to get to such a simple result. We've had to fight awfully hard only to have the district rep come in and act like everything was peachy and they'd do anything to accommodate us. I was ready to fight again. My adrenaline was pumping. And then? Nothing. I was telling Is.aac last night that it was disconcerting in a way. With the way my mind tends to overanalyze things, I have been stuck on this point. Why was this so easy when everything else, even getting the boys tested, was so damn challenging?

Was it simply because we were dealing with someone new? (thank goodness)

Did the district decide they just had nothing they could argue after how things were handled before this? (possibly)

Did the district decide that it just wasn't worth it to push back on these issues once they knew I wasn't going away? ("Don't fuck with me fellas."*)

I just don't know.

It was mentioned they've discussed at the district level how our situation was handled and that they have focused on what they can learn from it. I suppose that can only be a good thing, even if they learned nothing more than I am a bitch and will fight back for Sh.awn whenever I need to. It would be a bonus if they learned that flippant and rash decisions can so adversely affect children.

It still makes me intensely angry to think of the stress and anxiety we all felt during this time, especially Sh.awn. The meeting yesterday confirmed, once again, what I already knew - that his suffering was avoidable.

For now at least, I know I did something to prevent this kind of thing from ever happening to him again.

*Bonus points if you know where that quote is from. It's been playing in my head all week long. lol

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.

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.

Finally

(This is a follow up on Sh.awn's IEP meeting.)

At the end of October, we had the boys' initial IEP meeting. (You remember, the one with SEVENTEEN people sitting around talking about my boys.)

For months now, I've been going back and forth with the school district. My sticking points were that they arrived at a very low result for Sh.awn's IQ. I also disagreed with some of the verbiage they used to describe some of Sh.awn's behaviors. When I signed the paperwork to allow testing, I knew there might possibly be a lower result than what I'd suspect his true IQ would be. I based that assumption on my gut feeling he has an expressive language disability. So, I thought of be prepared if it actually happened. Unfortunately, the number they produced for my boy was so far skewed that there is NO WAY it is a valid indication of his mental ability. (Actually, it was nothing short of insulting.) The psych, herself, even stated that she felt it underrepresented his ability.

While it was at least (a small) something that she added that statement, I could not allow something like this become part of his permanent record. My gut just knew there would be nothing to stop future educational settings from going back to that one number and using it to make judgments about Sh.awn's ability and/or his future educational path. That possibility was definitely not something I could ever be comfortable with. Plus, for him to qualify for other services in the future, there must be a discrepancy between his ability and his potential. With a number like this, there would never be a discrepancy. They'd expect nothing from him.

My boy who is working at grade level right now.

My boy who is sounding out words and attacking reading. Look at this!

My boy who has had every single person who works with him say he is a pretty bright kid.

My boy who already has to fight for everything. He should not have to fight for an appropriate shot at learning.

So, I refused to sign the IEP.

They got all huffy about how he wasn't receiving the services he needs! The services that will help him! What I was asking was unethical! Blah, blah, blah.

I countered with the fact that we started this process LAST JANUARY. It has been a year of dealing with this because of how they initially responded to my request to test him. Waiting a few more weeks until my concerns were adequately addressed was not going to hurt him any more. And look! He's on grade level academically ANYWAY.

Today we met with all of the district special ed big wigs. They moved the meeting from the school to the district office. (Trying to intimidate much?) They tried to convince me that they can't change the report. What about retesting him? (Hell no.) What about signing it and noting what we disagree with on the IEP? (Hello? How does that prevent any of my concerns?)

I stayed firm and refused.

They went back to the report to review. I explained my concern that this IQ score was calculated even though he failed to even attempt approximately half of the test and his behavior was such that he made it clear he was over answering the her questions relatively quickly. There is no way you can have an accurate result in that kind of situation?

I didn't back down, but eventually they did. They pulled all of the testing results that I refuted from his IEP. (I strongly believe they should never have included the results in their current form anyway.) They removed all of the areas in the report that I asked to have removed.

I feel better. His forms are now officially signed.

And Is.aac said I missed my calling as a lawyer. He swears he saw sweat appear on the lip of one of their "directors." LOL

Our First Parent Conferences

We had the boys' parent conferences on Thursday. I walked away loving their teacher even more than I did before.

Ja.son is proficient in all areas. She said he would be advanced, but the testing the are using at this stage of the game only measures minimum expectations. The next trimester's testing will include more advanced skills. The plan is to show mastery on the kinder sight words before winter break. She'll give me the first grade words/skills expectations then and we'll go from there. She fully expects Ja.son to even exceed the first grade skills at this rate. Whoa.

Sh.awn is basic (progressing toward proficiency) in about half the areas and proficient in the other half. For Sh.awn, it isn't exactly that he isn't "proficient" in all areas, but she's having a hard time formally evaluating him. He bores of the testing rather quickly, so that has made things a bit more challenging to assess. We agree that Sh.awn's academic skills are more along the average range, so I'm not at all worried about the "basic" results at this point. Our focus with Sh.awn will be to continue to acclimate him to the school setting so he'll be ready for the demands of first grade (he tires out about 30 minutes before the end of the half day at school and he still has some minimal behavior quirks we're working on), We both agree he is well on his way toward mastering the kinder skills he'll need to learn this year. Plus, I'll be working on the first grade skills with him when she sends the info home for Ja.son. But most importantly, she believes in Sh.awn and knows he is smart. I am happy with the plan for him, too.

It is obvious that she cares for my boys and wants to help them.

Just before the end of the conference, we got to talking about non conference things. She shared that she had difficult pregnancies herself. After losing her first pregnancy at 18 weeks, she went into preterm labor with her second pregnancy at 23 weeks. She came close to delivering several other times and went on 17 weeks of bed rest. Although she did ultimately deliver at term, she knows what it is like to have the neos come in to tell her the grim statistics for her baby if he were to be born early. For her third pregnancy, she had appointment after appointment with Dr. Doom, also. She had a cerclage at 18 weeks, more pre-term labor, and more bed rest. She delivered that boy at 39 weeks only to have him still end in up respiratory distress and need NICU time.

She gets it.

She's fighting so hard for my boys because she sees in my boys what life could have very well have been for her own boys.

I am so very grateful the universe put this woman in our path. It was just on the off chance that someone mentioned we could move schools to be closer to the therapy unit the boys attend. We found out by accident when it was time to complete the paperwork to move. Then the boys were first put into first grade classes, which meant the straight kinder classes were full and they only had space in this teacher's class. There was so much drama just trying to get them into kinder, and yet, it was like everything aligned for her to be the boys' teacher.

This woman who continues to send me updates like this:

Good Morning,
Before I forget...

1. We went to explore the computer lab yesterday. BOTH boys put on headphones to practice using the computer. We will be going regularly after break so I'm optimistic this will be an exciting time.

2. Layla and Ja.son have made plans to meet for Christmas caroling. At the end of the day yesterday, they had quite the conversation about missing each other and things of that nature. He then thanked her for the invitation to her house. Too cute!

3. Sh.awn helped me pass out Friday work! He called the kids' names for me. It ranks high on the list for times he has connected so completely with us. The kids enjoyed having him call their names and waited patiently for their turn. Again, too cute!

has been a godsend. I know not many teachers will commit and follow through with this kind of communication to a parent. For weeks, she sent me daily emails about the boys. While she doesn't need to email daily anymore, she still sends me updates about successes (or trials on those occasions) at least once a week.

So thank you, universe, for giving us this lucky break. Thank you for knowing we needed it even though we didn't know we needed it. I know our reality right now would be so different than what it is had she not been their teacher.

Now, what do I do for her for Christmas?!

Kindergarten Drama

For once, it's the innocent kind.

At drop off today, the boys' teacher told Is.aac she had to have a talk with the class about not kissing at school. The new directive is that "we only kiss our family." 

Why you ask?

Because Layla, a little girl who seems to be Ja.son's biggest fan (his words, not mine), was kissing on my boy at recess, of course.

I'm dying here! Lol!

Apparently it was all very innocent, and Layla was heartbroken that she had "broken" a school rule.

Ja.son, on the other hand, had no idea why the teacher talked to them at all. I asked him if anyone was kissing at school. "Mom, that's silly." was his reply. He's such a clueless boy!

"Do we kiss anyone at school, Jay?"

"We only kiss family."

Lol. I suppose it will be interesting when my boys start kissing each other. Hey, they're family, so it's allowed! I bet the teacher hadn't considered that one.

~~~

I had to laugh when Is.aac sent me a text later in the day bemoaning the fact that he had passed on his school boy curse to his children. He had a rough time in elementary school himself because all the little girls would stake their claim and harass him. "You know, Stac, those little girls can't resist the (our last name) looks and charm." LOL.