January 28, 2008

ramblings

Nevin's writing!  or at least he's starting to initiate the ideas for sentences.   Who'd of thought he'd be so excited about a blog.   He's enjoying the comments, tonight after posting his story he started listing his long, long list of people to send it to.  :)    Hard to explain that it's posted and they will see it.

I think maybe a year of having Netflix, then replacing it with Blockbuster...... taught Nevin that the computer is not a self contained unit.  He was able to tell the computer which movie to send next  and then "poof" the mailman brought it!!

He is also enjoying having a penpal, although he's a bit worried about his penpal because Austin is in the hospital right now.  But we're praying that he gets better soon and are excited to do a road trip and go to the zoo with Austin this spring.  

My "talk" for the HADSA (area Down Syndrome group) is this Sunday...... I know.... I'm competing with the Superbowl, so maybe there'll just be a small group.   Who knows maybe it'll just be me :P     

Anyways....... please pray as I prepare!  actually pray THAT I prepare, pray that I can overcome my innate habit of procrastinating.   It used to work ok when I was younger, the adrenalin kick could usually get me through with flying colors.   But now that I'm "older"..... the adrenalin just seems to raise my blood pressure and stress me out instead of "energizing" me.   

Thanks to all of you who have been supporting Nevin's blog.  He is definitely pumped!

January 26, 2008

Nevin's Blog

Just in case I have too much time on my hands, I decided to start another blog.   Nevin and I started one for him today.

We are going to use his blog to "write" a story with pictures.  For our first story, I took pictures during our Nerf Gun shoot-out.  And then together we picked out which pictures and together we came up with a sentence for each picture.  My goal is that he can become more independent in his "writing" and start coming up with his own sentences.  Nevin does not consider himself a "writer" and will often "clutch" and nearly break into a cold sweat when expected to write.  Sooo.... we're working on the perception.

If he seems to really like it, I may get him a cheap digital camera and have him take it with him places ..... so he can also shoot and choose his own pictures.  

I also think he will enjoy people reading and commenting on his blog about his stories.   

We'll see how it goes.  I would love to at least do one picture/one sentence each day.  We'll see.

So our first story is written and posted.  Click on Nevin's blog link to the right. (since I haven't learned yet how to put a hot link in my post)


January 25, 2008

5 hours

5 hours.   That's how long I spent "working" on my blog last night.   I know........ doesn't look like I worked on it at all, does it?   When I got up this morning, I was thinking to myself....... boy, I sure did a lot of work on my blog!   hmmmm........... but my "fan club"  :)  is going to think it was just another day without a post!

Soooo........ I'm here to say, that I worked on it for 5 hours!!   I'm trying to learn how to post an audio clip, because I want to post "Nevin's song".  The song that my brother wrote for us the year Nevin was born.    So, I trekked for MILES through the internet jungle.   Following bunny trail after bunny trail.   Oh, my poor aching feet, I mean, fingers.  :)    One of the most wonderful things about the web is that you can always find your way home.    You may never be able to find your way back to that  wonderful website you found (if you forget bookmark it, i.e. leave yourself a breadcrumb trail like Hansel and Gretel..... oh, wait, that didn't work out so well for them! )  but you can at least always find your way home!!

I did, FINALLY, figure out how to do it....... actually, no I didn't.   I just wanted one of those little audio slider thingies..... that would play the song.     BUT, I did finally figure out a work around.    Soooo.......... coming soon (when I have a few hours to toss at my blog) :  a slideshow of Nevin pictures, with Nevin's song playing in the background.

January 23, 2008

Goodwill visit

Overall, our Goodwill visit went well.   The facility is nice with many different jobs (stations related to different work contracts) and may be something that we would be interested in at some point.   

It IS confusing for everyone because since we homeschool, the "system" doesn't know what to do with us.  And even IF Nevin were in school, he probably wouldn't be doing this Goodwill assessment until his last semester (before graduation).  Which in the public school setting would be three years from this spring.  So, I may have jumped the gun a little by involving Voc Rehab.  But, in all actuality, we are on the mark with starting to think about getting some work experience and building independent job skills.  My intention was to see if there was anything that Voc Rehab had to offer to us....... but it appears to be an all or nothing package.   And it appears that it may be something we consider later....... like in 2-3 years.

The hardest part about the meeting was watching Nevin struggle so much with conversation. Unless the conversation is about things Nevin is very familiar with he just can't handle question/answer type dialog.  I'm sure he didn't understand much of what we were all talking about.  They were very respectful and very much treated him like an adult and thus directed their explanations and questions directly to him.  Unless I had "intervened as an interpreter", so to speak, neither party would have understood what the other one was saying.   I always wonder if I should be backing off more, if  Nevin relies too much on me for conversation interpretation.  (I'm sure that's what all the "caring professionals" in the meeting probably thought)  I wonder if we need to seek more support (i.e. speech/language therapy) to help us.  Or is this just related to his cognitive processing?  I just know that my heart hurts the most when I think of Nevin's struggles with understanding what's being said and being understood when he speaks.

So, as we've always done.  We press on to figure out how best to provide support for Nevin as he continues to learn and grow.   Their recommendation was to connect with the school system and see if they have anything to offer to us.  I will.  And I will learn from it.  I've visited before and I learn both about things that we are doing very well and about a few things that we could work a little more on.  I think maybe I might visit several schools, to see what they have to offer.  I love learning from others and then modifying/personalizing it to meet Nevin's needs.

Last time I visited school, I learned that we are doing just fine at home.  I think Nevin learns better in the environment in which he will function in.  The things they were doing, were being done in an artificial environment (e.g. 2 field trips/yr, as a group to the public library vs. Nevin's weekly trips to the public library where he has learned to find his favorite books, manage his library card, check them out independently and wait for me by the front door) (e.g. double PE class, one for PE and one class period for learning to shower independently, etc. vs. Nevin's increasing independence accessing the pool, lockers and padlocks, showers, membership card, etc. at both the YMCA and the Rockwell Rec Center.)

My own assignment for myself is to pursue a part-time volunteer job for Nevin.  hmmm.... maybe cleaning the library at our church once a week, or something like that.  Kevin and I both walked away feeling that our best bet is to "do it ourselves", i.e. continue to homeschool our way through job preparation, job training and job experience....... albeit, probably all volunteer work.   But volunteer work is a good life lesson as well.

It does get a bit crazy sometimes, trying to mesh support services (SCL, respite, etc.) available from "the system" with our  homeschooling.   But, experience says....... keep on, keepin' on.  :)

January 22, 2008

Episodic

Yup, this is my blog and as you can tell....... routine is something I struggle with.  While I may intend to post entries more often, my best effort will most likely be episodic (defined as: occurring occasionally and at irregular intervals).   :)   yup, that's me!!

I have much to write about, ..... including birthdays (Nevin is now 18 and Nolan is 21); a trip to Oshkosh for hockey, Packers, birthday party and fun!; snow and more snow!; our visit tomorrow to Goodwill for a meet/greet and tour; Nevin has a new penpal that he is excited about; working on obtaining guardianship of Nevin; .................... so, let's see, what should I write about ........ hmmm.......

The winner is: our meeting tomorrow at Goodwill.   Some of you may know that Nevin and I have been pursuing support so that he can get a job.  We're thinking something for 2-4 hours per week. And of course his dream job is working at Chuckie Cheese's like his big brother Nolan.   So we've been in contact with Voc Rehab to see what he would qualify for.  

Meeting #1: we were told this was an absolute requirement to start the process.  So Nevin and I attended a session with about 8 other adults who had very little in common with Nevin.   At the end of the session the presenter pulled us aside and said "basically, everything that I covered today has nothing to do you (Nevin)"...... "it really would have been better if you had just set up an individual session with a counselor".   hmmm.......  maybe you should communicate that with the secretary.

Meeting #2:  Individual session with counselor.  We totally confused the man with our homeschooling.   They just don't know what to do with us (no IEP, no behavior plan, no special ed teacher, no transition plan).....at least, no plan written by a "professional", and the information that I brought with us didn't seem to be heard :(    After stating that he had never worked with a homeschooled student before, he went on with the "routine" questions....... 

Counselor: "Do you drink beer or alcohol?"
Nevin: "no, no beer"
Counselor: "Have you used any illegal drugs, cocaine, heroine, ......"
Nevin: (very demonstratively shaking his head): "no, just Sprite"  :)
Counselor: "Do you want to register to vote?"
Nevin: "no thanks, we have a boat" :)

The counselor went on to explain that most kids who've been homeschooled have behavior issues when they start work programs and so it would be best to have him attend Goodwill, 5 full days/week for 9 weeks for a vocational assessment.  (hmmm....... I thought he said, he'd never worked with a homeschooled student before!).  I was horrified that because we're interested in 2-4 hours a week of working with maybe a job shadow....... they need 270 hours worth of assessment!!   I think he sensed my "hesitation" and stated...... we'll discuss it further at our next meeting.   First he needed do the official paperwork to "qualify" Nevin for services.

Meeting #3:  (armed with my new information from our case worker, that Nevin would qualify for an "On-site" assessment at a job location).   Counselor informs us that  Nevin qualifies.  And that he still recommends Goodwill assessment.  I state that we would prefer an on-site assessment.   He looks surprised and then states that because Nevin has been homeschooled we need to work him back into the "real world" gradually.   He thinks we could probably work out a flexible schedule for the Goodwill assessment....... maybe three days a week, or half days..... maybe just for six weeks. 
   
WHAT?!!  work him back into the "real world"......... oh, that's right........ we've been keeping him in a cave here at our homeschool....... NOT!!   he lost me at that point.
  
At that point Nevin said, "I wanna work Chuckie Cheese".
Mr. Counselor, leaned over the desk and in a condescending  voice said to Nevin, "you can't just play at Chuckie Cheese's".
Nevin:  (with a very disgusted look): "No! not play...... WORK!  you know.... vacuum, clean tables, dishes,..... .... work!"

I'm thinking "way to go Nevin!!"  Mr. Counselor had a surprised look on his face, but still didn't back down.  He said, maybe, AFTER Goodwill assessment, we could think about an on-site assessment.    Then...... I think seeing my resistance, he suggested we just do a meet/greet and tour of Goodwill.

  So..... I don't want to not explore all our options just because Mr. Counselor is ignorant.   So I will give Goodwill a chance.  So tomorrow, we go for the tour.  Maybe they are wonderful people and we'll be impressed with their program.  I need to get my questions written down.... and try and get my emotions in check!    Kevin's hours have changed so he will have tomorrow off and be able to go with Nevin and I.   Yippee!!  That should help both in  dealing with Mr. Ignorant Counselor and with being able to process together and make decisions after our tour.
Sooo....... we'll keep you posted!

January 12, 2008

acronyms

Have you ever spent time trying to figure out an acronym? They're all over, we have so many acronyms at work that I can't keep them straight. Text messages (especially from young people in my life) are full of series of letters that I'm always trying to make sense of.

Today, I venture down to the North Liberty Community Center to check out their wireless. Since I will be doing my presentation there in February, I wanted to make sure that their wireless and my laptop could be "friends" :) As I parked in the lot and walked in, I saw NACKS in big letters on the outside of the building. My brain puzzling over it, maybe North Liberty Area Community Kids Service?? but then, why not an L. It was on the corner by the pool, maybe the last letter is Swim..... C has got to be community......

When I got close..... I chuckled at myself. NACKS was posted in big letters above a small window with a counter. Awww...... SNACKS!! The first S had fallen off the word.   :) 

January 10, 2008

overwhelmed

Wow, the second day of having a blog and I get to report that I am overwhelmed already.   Not really by the blog, but by the events that inspired me to start a blog.  I have offered to speak (what was I thinking?!?) with our local Down Syndrome Group about some of the strategies that we have used to make reading more accessible, as well as share some of the websites that I have recently discovered that have free online interactive books.

My job tonight was to just come up with a "blurb" for the newsletter about what the next meeting will be about.     Oh, my goodness...... if I struggle this much trying to write a "blurb", maybe I shouldn't have offered to do this.   Although, some of you know that I'm usually ok if you stick me in front of a group and allow me to speak my heart and my passion.  If I try to write a script, I'm usually in trouble.

Sooo....... back to the blurb.  (*note.... rough draft follows... to be reviewed and re-written after some much needed sleep)    Maybe just something along the lines of:

"A Show and Tell Session"  
Laurie will be sharing some of the tips and tricks that she has found useful in making reading accessible for her son, Nevin 18, over the years.  Some things that will be shared include examples of: how to write/make books personal and meaningful for your child;   a variety of ways to publish books in your kitchen with simple household tools; how to turn your digital camera into a teaching tool, as well as a communication tool; how to make your own interactive books with PowerPoint; ............. (and maybe some more things I haven't thought of :)

She will also be demonstrating the Boardmaker software and a few of the many ways it can be used to make learning visual for your child.

We will also go online together and see some of the wonderful free interactive books and activities available.  

Whatever the age of your child, birth to adult, you'll walk away with a new idea to try when you get home.

......... ok......... now I feel better, at least I have SOMETHING written down...... now on to the much needed sleep!!    good night!


January 9, 2008

So what's in a blog?

As I've played with getting this blog set up, I've pondered the question...... why?   Why am I doing this?  what do I want it to be?   Originally, I was thinking that it would be a place where I could post links to some of my favorite sites.  A place to post pictures of the people I love..... they say a picture is worth a thousand words, right?  so, I've already posted thousands of words.  :) 
A place to write, like a journal, some say.  Hmmm, journals have always been a private place to write...... not quite like writing out here, in public.   I've always considered myself a private person, however, Nevin has helped me move out of that "box" (I'll save that for another post).   So why in the world am I thinking that I would enjoy writing..... out here....... "in public".   
I have exposed my heart to others a few times through my writings.  I have found that it helps me to "process" my feelings.  Now, as to whether that is of interest to any other human being in this world....... I don't know.   I guess............... I'll just see what happens.   See how it feels.   It does feel different than writing in a book that I know no one will see.  Soooo...... a new journal, a new journey.

picture collage



It's about.........

It's about time.  It's about love. It's about life. It's about family. It's about work. But above all else, it's about.......Christ!