Tag Archives: private

For me?

16 Jun

School’s out FOREVER. It’s true. Kiddo’s school closed for good- no camp this year, no brand new school year in August. The economy and the resulting drops in enrollment have left us scrambling for options for his second grade year, and without an appropriate summer program. Eeeeek! Trying to figure it all out, trying to heal and get strong (I now have Enbrel on board), trying to get our shidoobie together as it feels like we’ve been in survival mode for far too long and that stress has taken quite a toll on all three of us.

I’m sad about the school closing, but also aware that this is an opportunity to change things up and maybe put a more holistic program into place for kiddo and for me.

Necessity is the mother of invention and the mountains that appear unconquerable at first, in time become the source of great opportunity and unparalleled learning.

Puttin’ mah boots on and waiting on a new pair of wellies for kiddo. We’ll climb the mountain, and stomp in a few puddles before this summer cools off.

xo
Bek

A is for….

22 Mar

Awesome Friend

Laaaaaaa!

Echoes

X-Blocker!

Artistic

Nutty

Drains

Electricity

Reading

(They had to make a “poem” using the letters of their names… That’s just his first name(above)…. His last name list included “Aspie Power!”, “Unique”, and “Superstar!”…The Laaaaa! in his first name is additional proof (like I needed any!) that the apple does not fall far from this Mama apple tree…I have been known to bust into showtune or operatic moments… Lots of “Laaaaaaa!” for no apparent reason, and just for fun…X-blocker is his superhero name.  He can throw his arms and legs up and out like an X and bam! you just can’t get by him-especially in the kitchen or if you are carrying something bulky.)

Anyway, he’s having a hard time.  His teacher, from what I am getting at this end, is having a hard time understanding that Alex’s misunderstanding directions is not willful.  He spends hours on homework with his Daddio every afternoon- so much so that he has no time for play during the week.  It is a struggle.  I think a regular, non-Aspie, non-LD kid would take awhile on the homework, especially as a first grader, but for Alex it’s near impossible.

And the kicker?  They sent home a homework folder with instructions on when homework is due, grading (if one bit is not done he gets a 0 for homework for the whole week), and what needs to be done (ie 5 spelling activities, x number of pages of reading, x number of pages of handwriting, x number of pages of math homework, etc…All supposedly per/week…)

So what do we find out?  The instructions in the homework folder are completely inaccurate from what the teacher wants.  So who gets penalized?  You’ve got it.   It wasn’t x number of pages of math/week- that was a typo- it was that many pages PER DAY.  For the love of Pete! And nobody told us until we were more than half way through the quarter!  They gave out a project assignment, with a due date, which Alex and the bald guy stayed up late working on (and even took a field trip to add authenticity to the “magazine” they were creating)… Alex goes to hand it in and guess what?  It is due the next week and now it is double the pages and there are more parameters to follow.

So, WTF?

To top it off, Alex has come home a few times seeming pretty glum.  I have asked him what happened and I used to assume it was a kid/social issue, and it is sometimes, but more often than not his teacher (who I have met and she seemed like exactly what Alex needed…We did provide the school with information that explains Asperger’s on a basic level and I even gave them some books on the topic and offered both myself and the bald guy as available to address any concerns, questions,etc) is making comments to him that are really pissing him off.  Ok, that’s my word.  But as he has recently taken to not lashing out when someone says something that doesn’t make sense and instead is bottling it up to bring home to me, the words are eroding his self-esteem.

Today he came home and told me that his teacher said that he only does his homework when he feels like it.

?!?$?#@%$@$

WTF?

4 hours nightly and no time for play… Any other time is used talking about social stuff and reading together.

And she thinks he’s only doing homework when he FEELS like it.

Yeah. I know!

The baldman is going to have to go in to talk to her and the principal.  I can’t do it. The same questions and gaps in communication keep coming up and baldman and I are forever walking around with Peanuts squiggles over our heads about the things Alex brings home- homework, things that other people said…. Baldman is going to have to take this by the horns.  I’m too sick (this is the first time I have my laptop open for more than 5 minutes today.) and tomorrow I am pleading with the ER to admit me for tests. Something very screwed up is going on with my spine, nerves, brain.  I’m in pain, I’m exhausted, and I am not alert at any normal human functioning time to communicate with school. And I can’t drive. I can barely leave my bed. And the whole getting my point across without following a tangent and never getting to the point- you know, my Aspieness, my ADD-ness- also lead to Baldman handling this one as an answer.  But it’s really hard being the one that understands Alex. The only one that really understands Alex because we share a neurological disorder, and because of that disorder and my other health crap I can’t advocate for him.  I can’t be as active as he needs me to be and I swear to *insert deity/higher power/universe at large here* that I would rather be a head in a bubbly giant pyrex beaker thing than this broken pile of pain and vertigo and numbness and hypersensitive senses, because as long as there was a way for me to communicate effectively I would do so.  I would advocate for my kid, loud and clear. And people would give me the benefit of the doubt and come to be with questions or for clarification, rather than just ignoring me or judging me.

This is so frustrating.

Anyway. I’m off to the ER tomorrow. It’s the only way I can get the tests I need to see if the damage in my spinal column has finally impinged on the cord, and maybe figure out what the heck the mass on the back of my leg and on my left abdomen are all about.

Sorry for the bitch-fest. Had to get it out.

No where was I… Oh….So…. Parents of awesome Aspies and kids with communication/learning disorders etc..(similar or otherwise)… Any suggestions on communication between home and school? I was thinking of doing the daily report card thing…Has anyone had any luck with that sort of thing? Any suggestions for a kid who doesn’t have an IEP (he goes to private school)?

If I wasn’t this sick, I’d homeschool him in an instant.

And no the baldman can’t do the homeschool thing because (drumroll please) he starts work in 3 weeks! Yes! That is the good news you have waded through this post for since you read the word “LAAAA!” up top!  Baldman got a job with the census!  He starts training in 3 weeks. Which means that even though most of the mechanics of this old broken body are not working or are not feeling right while they are working, we are in a time crunch….

Anyway….suggestions? resources?

hugs all around.

xo

B

P.S.  Once I am back on my feet- or at least sitting upright a little more comfortably, I will be running some sort of a fun and exclusive fund raiser to pay for the impending hospital, docs, and lab bills.  I have a bunch of stuff I never listed and I’m thinking of doing another grab bag extravaganza.  Whatever it is, it will be pretty sweet, ok?  If you have other ideas let me know!

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Quiet….

18 Oct

It’s quiet… The stress of this week, the fight or flight response of Tuesday’s meeting with the school district, has mellowed a bit…

We are not pulling kiddo from his school until we have a better plan in place.  I feel like we were blindsided and given no time to gather people and information as the test results came in and BAM! same meeting we were writing the IEP- with really no idea of what we could include…

So we are on a little mental vacation from planning and researching a change.  Instead I have been strategizing on how to reach kiddo and the three of us have been working together to plan how to help him in the immediate future.  It’s frustrating.  He is overwhelmed, but also relieved…  He told me he was worried about school.

He said, “I fit in.”

I think he fits in right now the way that someone in camo fits in with the forest…I think he blends enough that some of the kids accept him.  If he feels that he fits in then I am so happy about that.  I never had that feeling of fitting in as a kid- not even with my family, immediate or extended, and I struggle with it as an adult, but for the most part I have my tribe. I am loved and I love. And I love that Alex feels loved by the kids at school, even with the constant struggles and the huge differences.  I love that they take him by the hand and sit him down and even though he is often looking off into space (or at the fire sprinklers or ceiling fan), they treat him as an active participant…  When I pick him up from school the kids tell him that I am there and on occasion this one girl who Alex adores will help him clean up his space and remind him to bring his lunchbag to me, at the door to the classroom… She will hold his hand and lead him to me.  Sometimes I get progress reports.  It’s amazing the differences between the two, and he is 5 and she will be 4 soon and there are similarities, but it’s the differences that are so beautiful and startling and it is this difference between Alex and the other kids that keeps him safe in many ways, at least for now.  At least until they start noticing differences as a negative thing.  It happens. It is life. We have so much work to do and what a rollercoaster we are on…

But I wouldn’t trade this experience for the world…

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