Tag Archives: iep

Ryan Gossling + Special Needs + Adventures In Extreme Parenthood = Awesome

16 Mar

Sunday, the brains and funny bone behind ExtremeParenthood.com, has struck comedy gold with her take on the whole Ryan Gosling Hey Girl meme thing….

Just clickety click and you’ll see what I mean.
Not a special needs parent? Click anyways. It’s good stuff, and we could always use another regular-needs parent aware that we go through so much with our kids and their special needs…So much so that we have to learn what equates to a new language, new culture, new pretty much everything and for some it’s a crash course, for others it’s more of a gradual immersing in the wild ocean waves and foam and errant riptides that can be parenting, but is more frequent in special needs parenting.

And I think you’ll laugh. Even if you don’t know what an IEP is or PECS are. And especially if you do….

Here’s the linkeydoo again…

xo
B

p.s. There are a pile of Ryan Gosling Memes and Ryan Gosling Meme-spired Offspring out there…

Two more favorites:

Hey Girl, It’s Rachel Maddow

Handmade Ryan Gosling

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Alex’s Journey to Camp Cheerful UPDATE July 9

11 Jun
Alex’s Journey to Camp Cheerful UPDATE…
I want to thank all of the wonderfully generous friends who supported us in our fundraising to send Alex to this special camp.  Unfortunately, life had other plans for the time being.  Due to fairly dramatic health issues (more on that later), I am unable to accompany Alex to Ohio, so we are postponing his experience at Camp Cheerful until next year. I did return all funds raised, to their respective contributors, due to the change in plans.  Alex is disappointed, but he is very vocal about wanting me to get better.  We are working at getting new therapists on board for him, locally and hopefully camp will be in reach next summer and I will be 110% again!  Thanks again to everyone who continually roots for Alex.  Alex is well aware of the love everyone has shown us along our long journey.
xo
B

Alex is my amazingly brilliant, funny, sweet kid who has Asperger Syndrome. Asperger’s is a neurological disorder, it is a developmental disability.

Alex is almost 7 years old. There is a summer camp (Camp Cheerful) in Ohio specially
designed for kids with Asperger’s. It includes things like Occupational
Therapy, which would be a huge help to Alex. The camp would help give
Alex the tools he needs to face his daily challenges, which are more
than most adults could tackle every day.

Here’s a wonderful description of Asperger’s Syndrome that recently aired on the PBS show “Arthur” (the meat of it is only until around 2:45… so if you aren’t into Arthur please don’t feel you need to watch all 7+ minutes!)

For a more straight facts, less dramatized (less animated) description please visit AANE’s AS facts. For our personal experiences please read the Asperger’s entries on my blog

Love and peace,
Bek, Jeff, and Alex

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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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Ode to Boy.

30 May

Alex
Alex

Originally uploaded by CleverIndie

Today we went to the Kindergarten graduation ceremony at Alex’s school. Alex and the rest of the pre-primary kids had prepared a song. I slept a little longer than the boys this morning, and Jeff got Alex dressed. Alex was thrilled to wear a buttondown (his favorite type of shirt) and his rockin’ tie from Toybreaker.Etsy.com.  (Alex has been doing mostly kindergarten work this year, but will be starting his official kindergarten year in August as we all agree he needs the extra time, and the nature of the program allows for this flexibility which is important for a kid like Alex who is uneven as far as development goes.)

We got to school and took our seats…Listened to the squawking of the first group of kids playing the recorder. The next group went up, and gave a little history on Beethoven and his impact on the world and on music, then they started to play…

With those first few familiar notes I looked at Alex and he looked at me and put his head on my arm, and my big boy snuggled so close to me. His eyes were sparkling, starry and happy and overwhelmed and so in the moment. Classmates were play fighting in the back of the room, parents were craning their heads to keep track of their wandering pre-schoolers, and Ode to Joy swelled through the room. And for the first time, it was like this was a moment, a song, an experience, that he was truly connected to. His mind wasn’t elsewhere, he wasn’t talking about buttons on radios, or how a siphon in a toilet works…

He sings Ode to Joy non-stop in his head (and many times aloud) from morning to night and probably even in his dreams. It’s his constant. Ode to Joy calms him and provides comfort through the million and one transitions in his day- some of those transitions are so minor to the casual onlooker, that they would never identify them as such. Everything is a transition in some way, Alex is always very aware of this. Ode to Joy is his security blanket. I know the other kids in his school don’t have their personal theme music playing in their mind 24/7/365, but they don’t need to either. Alex needs that. He identified it himself and started using it as a tool. It seems to quiet the rest of his very active mind so he can function at any level.

On some days it seems like walking, chewing gum, and trying to juggle flaming ginsu knives while translating Lewis Carroll using only a Berlitz guide, into an unfamiliar language (with a different alphabet), while someone barks random numbers and throws sand at you, all at the same time.

To decompress after school and on weekends and holidays, Alex stands in front of his radio and watches the numbers and listens to the 10 different versions of Ode to Joy we loaded onto the ipod for him. Occasionally he pops out of his room to declare something Ode to Joy or plumbing related, but mostly he needs this decompression, the radio supplies the song so the part of his brain that has it on mental repeat during regular daily functioning can rest.

But today, once they started to play the song, he was in the moment.

His brilliant and busy brain and the outside world converged in the space of that room, perched upon a folding plastic chair.

He was at peace for a moment, so connected. So was I. My brain is usually working on how to help him and the things I have to do, there is no down time.

But in that short yet gigantic moment today, both of us were present, for the first time in forever.

And his face and eyes, when they met mine, told me that he was overwhelmed that the world had finally connected with him.

Alex’s Wishes.

29 Jan

Alex is back at school today. We had a good meeting with his principal to discuss safety, Asperger’s, and helping him and she had a brilliant idea. She is going to talk to his teachers about changing his school schedule, not because of what happened on Tuesday, but to give him more space and attention, so his sensory stuff won’t be the focus, and he can flourish…. He seemed a little better today, I sent him off with his qcharm bracelet (will blog more later, it’s pretty cool) and hugs, and I printed out a social story on bullies. School apparently thinks this is an isolated event. I hope they are correct. They thought the boys were just playing rough. I mentioned the foot prints on Alex, and we had a good discussion about playgrounds, bullies, and kids who can’t understand intent.

I have been meaning to share this with all of you… This is a note Alex wrote to his Dad when his Dad was up in Boston in November, visiting his dad/Alex’s Grampy (he has lymphoma, but at that point he was in ICU barely holding on, so we got hubby up there as quick as possible to help his family and be with his dad)…

Alex may not understand people’s intent. And he is not so good at reading facial expressions, subtext, that sort of thing. He is very black and white, not a smidgen of gray area.

He does understand: Happy and Not Happy.

He wants us to be happy. We do our best to make sure he knows that any tears, any anger, and crankiness is not because of him and we try to show him and tell him that we love him and that he belongs here with us, in our family, and that we are a team. He knows we love him and that won’t go away.

But he does know when we aren’t happy. It’s a reminder of how kids read the undercurrent of emotion in a household, in a family, between parents. If my kid, who has difficulty with social communication, can sense this and simplify it so that it means something to him, how are (for lack of a better term) neurotypical kids understanding what our families go through all the time, but especially now in this time of great strain in our world- how are they perceiving family security, relationships, economic hardship, violence anywhere? I half watch the news every night and if I had to sum it up in Alex’s terms I’d say “not happy” would be the state of the world… Hope is everywhere, change is upon us, but change is difficult on everypart of our bodies, our minds, our families… It takes time. But as a point in time I’d have to say “not happy” seems to be everywhere… The principal mentioned that everything- the general vibe, the volume, the attitude- has changed at school. She thinks the kids are feeling the changes in their homes, the worries, the strife. I believe that.

Anyway, Alex knew Grampy was very sick, so every night we blew wishes (kisses, but he tends to hear things a little off…like playing operator) and they flew up to the ceiling, got caught in the current of the ceiling fan and flew to the door…I’d open the door and out they would fly to the universe to make the universe happy so it could help Grampy. Pretty fantastical and abstract, but there are a few things he takes, in his rule based world, as fact. Blowing wishes and holding them and letting them go when someone needs the help of “best wishes” is fact, it’s real. And it is soul soothing for both of us.

Alex wrote this note to his Dad. He announced he was going to write his “rules for Daddy”…

Here they are:

Alex's Rules for Daddy.

Alex's Rules for Daddy.

Yesterday, when we returned from school and the post-meeting trip to Target (out of printer ink and diet dr. pepper…yes I admit it. I can’t function without the stuff and I don’t drink coffee and some days tea does not cut it as much as I love love love tea), he wanted to use my little stapler that had been relocated from the fridge (magnetic everything!) to my nightstand as I had been in bed organizing his papers earlier in the day. So I sent him to get paper and he came back with his little notebook (that I forgot he had…he has a big guy journal he writes in on occasion, but this one has been around since he was a baby…it was his blues clues notebook for a while, but we kept forgetting it) and showed me that he wanted to staple the letter he wrote. He managed to get two staples into the sheet and still wouldn’t listen that staples are connectors/fasteners so I decided to give him a visual demonstration and I asked him for the paper.

While Jeff and I were in the kitchen talking, when he was hanging out in his room listening to his Ode to Joy CD, after the playground thing, he wrote this in his notebook:

Letter to Mama and Daddy

Letter to Mama and Daddy

“They were not being happy. Please be happy. xo Alex”

It doesn’t seem to register to him that it is ok to be unhappy. I have tried, and will continue to try, to instill in him that a negative emotion is a sign that something needs to change- something major or something minor- that it’s a sign (I call it a green light) to figure out what and why something is making one not smile and a point from which to make things different and better. Sounds more complicated than it is…Basically, I’m giving him the tools to break things down so he can understand them better- the tools to see the colors that make up the big picture. Again, sounds more complicated than it is. We have seen moments of it working, one of the techniques is writing or drawing…

This was what he wrote… We are worrying about him and he is worrying about us.

So we are breaking it down further, and we do need to find a better way to help him understand that he makes us happy, but that’s not his job and that he brings us great joy, but he isn’t responsible for bringing us joy.

I guess I just don’t want him to feel like he has ever failed us. I don’t want him to waste his time feeling responsible for our happiness, I rode that treadmill for over 30 years until I finally realized I had to get off or I would lose what was left of me, I don’t want him to ever feel that…. I’m digesting the shame and confusion he has felt since the incident on Tuesday and it is paralyzing (and dehydrating). I asked him about the playground and the kids and their faces and their words and he blushed. He was embarrassed about it. I have never seen his cheeks rosy other than from exercise.

Unfortunately, his take on this is that the kids were happy they were hurting him.

But he knows he is sweet and smart and funny and kind and cute. He cannot connect why they hurt him to anything and takes it as fact, like just being happy to hurt him makes it an acceptable reason.

His teacher said this morning that she didn’t know it had been that bad on the playground as he sat and had lunch and didn’t cry or say much of anything. Then again, she doesn’t know the shell he disappears into as well as we do. Perhaps now the lines of communication and the potential for education will be wide open…

Hubby just left to go observe playground time…

Fingers and everything else crossed…

xo

Bek

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