An Object in Motion

Sometimes there's just no time to blog.  Wordless Wednesdays are a prime opportunity to still get something posted up here without the commitment to the written word.  This is not wordless, which is a good thing, since it's not Wednesday, either, but I have found myself without time to expound on my fabulous Sunday with my amazing little girl, at least not in a way it deserves.  So I leave you with this little experiment in light and motion, taken in a darkened theater space near the dinosaur exhibit at the Natural History Museum. 

13 People, a Sheet of Papers, and a Box of Tissues

There's no doubt about it, IEP time is pretty emotional for parents.  Maybe it is for educators, too, but I kinda doubt it.  So much about your child's future well-being is riding on what happens in that meeting, and while you, as parents, are considered a part of the IEP "team," having 13 people in the room, only two of whom are parents and the rest teachers, vice principals and therapists, kind of tips the scales rather unevenly.  That's not to say that the schools don't have the child's best interest in mind, but with budget cuts so widespread across the country, I've heard horror story after horror story of out-and-out fights  for services and appropriate placement. 

You can't help but go in on the defensive.

Especially when the wording sucks. 

A week or so before the IEP meeting, the parents are given a draft document, with some generic recommendations put together by the IEP team (not including the parents, mind you, as the parent meeting has not yet been held).  These drafts are actually very helpful - they give you something to go on, to discuss, and to use for preparation ahead of time.  And that's all it is...a draft.  Definitely not etched in stone.  Think of it as an outline  of topics for discussion. 

But some of the information on this document still hurts.  And still works you up into a lather, mind spinning out of control, heart palpitating, hands sweating, eyes watching the clock until each day/hour/minute ticks down to the moment in which you sit down in that conference room, papers spread out in front of you, facing those 11 others.

When a page titled "IEP Services - Least Restrictive Environment - Placement" has a section called "Placement Decision" with a box checked off that says, "Separate Class," what are you supposed to think?  Well, I can tell you, it sent us into a spiral of hurt, anger, frustration and serious concerns for the ability of the educators to make any decisions for children with intellectual disabilities at all, let alone to even be allowed to teach them.  Seriously, we were practically ready to pull Samantha out of school.  Well, I exaggerate a little, but how could we allow someone to completely disregard the potential of our child by automatically recommending a completely self-contained classroom for her for Kindergarten?  What ever happened to that all-important word, Inclusion? 

So, to make a long story short (yes, I know it's too late already),  after more than half an hour of us voicing our concerns, it was discovered that our fears were for nothing.  The box was checked as an unfortunate result of an issue with the program that generates the draft IEP. 

REALLY????

Needless to say, the pressures and worries of the last week all came out at once, and I was grateful for the box of tissues sitting on the table.  I would say I embarrassed myself by crying like a baby, but I think I made a valuable point to the other members of the team.  They were instantly sympathetic, and apologetic.  One even looked like she was about to cry herself. 

Why does this have to happen?  This process, while difficult enough for so many other reasons, really didn't need to be complicated by a default or a lack of clarity for the parents who don't create/read/study IEPs on a regular basis.  This little point caused so much stress to an already stressful situation, and while I was relieved, I'm also still a little angry.  Surely we can't be the first people to have had a problem with this...are we?

In the end, the meeting ran too long, and we'll have to re-convene soon.  The major point of placement has been agreed upon, however, and the recommendation was full-inclusion with a 1:1 aide for as long as is necessary (necessitated by Samantha's tendency to shut down in group settings and not participate in group class activities - a goal to correct that is on her IEP, too), to be weeded out when she's ready.

There were a few more points that we went into the meeting prepared to argue, but after hearing their sides to each of those points, we understand their reasoning and are good with the compromises we established.  I'll expound on those another time, after the next meeting.

How would I sum up this thrill-ride, laugh-a-minute experience in one word?

Whew!

Wordless Wednesday: King (Princess) for a Day

Don't Forget the Lyrics!

Have you ever been listening to a song and caught some of the lyrics in the chorus and said, "What a fun song!  I LOVE this!" and you'll just be singing along, not a care in the world...and then you caught the rest of the lyrics and put two and two together and said, "Oh, crap...nevermind..."  Like The Vapors' Turning Japanese.  Or Cyndi Lauper's She Bop (FULL of metaphor, that one...).  Or you hear a song and say,  "Yes!  That's IT!  That's MY song, that says it all/sums it up/is perfect..."  Like the Beatles' Lucy in the Sky with Diamonds (awww, such a sweet song...should be more like, I'll take two tabs of the unicorn/smileyface/dancing bear/rainbow/whatever, please...)  Or like The Police's Roxanne.  Your name/your child's name is Roxanne, and you are so excited because you've finally found the song you can put on your website/YouTube video/ringtone and never realize that it's about a prostitute.  Yep.  Just what you wanted to associate with your 8 year old. 

Steve and I were driving the other night, listening to a Madness cd, and the song Samantha came on.  Neither of us had even realized that they had a song called Samantha, so it was pretty exciting.  While I handle the photo side of things, Steve is the creative maker-of-all-things-video when chronicling Sammi's history, and is always looking for a good song to use as the backing.  I've already asked him to use Queen's You Take My Breath Away (it's on Day at the Races - if you haven't heard it, it's gorgeous, and I've associated it with my girl since she was an infant) on the next video he does, but now we have yet another one to use for yet another video.  He did, however, caution me that we needed to listen to Samantha more carefully and check the lyrics out online to make sure it's kosher.  I did just that, and unfortunately feel like a bit of a dolt because I don't understand the lyrics.  I think they may be alluding to something I would rather not have them allude to in relation to my almost-5 year old, but I just don't know.  Here's a link to the words (scroll to mid-page) - any thoughts?

Come to think of it, I haven't really listened carefully to that Queen song, either.  Just my luck it'll be about Jack Kevorkian...

Paying a Visit

As I had posted before, Sammi's previous in-home aide, N., had to leave unexpectedly due to some ongoing and escalating health issues.  This was pretty tough on all of us, as she had been watching and teaching Samantha for more than a year, and we knew that it would be next to impossible to find someone else that shared such mutual love with Samantha and who worked to teach her new things instead of just babysitting.  In the last 2 months since she left, we've had a revolving door of people coming in to care for Sammi.  Completely counter-productive, I think.  We worried that Sammi would grow attached to one of them and then some sort of roadblock would crop up to make it impossible for them to work with us.  Uh, like having to take a 2 hour bus ride to get to our house (a 10 min. drive ordinarily), or like deciding that the 10 mile drive was too far and demanding that the agency boss pay her mileage (we escorted her out the door quickly on her first day, as Sammi had already begun to form an attachment), and  like being allergic to our cats.  Yep, that happened, too.  But it was okay, because it was obvious that Sammi never actually really warmed up to that one, even after more than a month.  One real test for us is how much Samantha talks about someone when they're not there, or how Samantha acts with us when we're home and the aide is there.  For example, when I would get home Sammi would completely attach herself to my hip instead of staying with whatever game the two of them were playing.  Finally, after much trial and error, we have someone with us that Sammi really seems to like and click with.  Nevemind that she doesn't speak a word of English, but at least she's teaching Sammi some more Spanish.  I got home from work the other day (grateful that I could change my clothes in peace and get the child's supper ready) and Sammi and her aide were upstairs playing in her room.  Calling from the top of the stairs, obviously barracaded by the closed gate, Sammi yelled, "Abre!"  Woohoo, my kid just asked, in Spanish, for the gate to open. 

Anyway, I digress.  

On Sunday we went to visit N. at her house.  Usually causing a fuss any time we have to get ready to leave our house, Sammi was absolutely thrilled that we were going to see her.  She'd spoken to her a few times on the phone, after which she would proceed to say something about N. going to the doctor, getting all better, and coming back to play with her.  Ugh, what to do? what to do?  I have to remind her frequently that N. won't be able to come back, but that we can go to visit her.  When we got to N.'s house, Samantha couldn't stop hugging her and telling her she loved her.  I think that visit was just what she needed.  After we returned home, Sammi kept saying that she had fun with N. at her house, but hasn't yet gone on about her coming back.  So many times people just disappear from the lives of children.  Parents don't think too much about it because we do it all the time in our own lives, but I think it affects children so much more.  We had planned on having a little going-away party for N. on her last day with us, so Samantha could feel like she had a part in seeing her off, but N. had to cancel that day because of her illness (this from a woman who had called off sick only once in an entire year!).  Closure is important, and the fact that this visit was not necessarily closure, but an opening of a door into a different relationship with N., helps Samantha feel more in control, more secure.  I could be reading more into it than there is, but young minds are funny things.  Can't assume anything, can't take anything for granted.     

I leave you now with a couple of shots of my girl from Saturday morning. 

Noo Shooz

It was with a little bit of guilt that I made a particular purchase at Kohls on Sunday.  Nothing to do with Kohls, nothing to do with the $20 I handed over to the waiting clerk, nothing to do with the sweet little pink and white Carter's box.  Nothing to do with the child for whom the purchase was made.

No, it was to do with a vow I made almost 20 years ago.  A promise to myself not to support a "theft" that occurred some time circa 1992. 

Light-up shoes. 

I bought Samantha a cute little pair of light-up mary jane-style sneakers.  And she loves them.  Jumping up and down, and kicking her heels against a couch,floor,chair,step,whatever, nearly bending over backwards to see the flash or orange light on her heels, how could I resist the temptation of the joy they bring her?

But at what cost?  A two-decades-old disappointment to a friend, I guess.  (Lisa, Beth & Tricia, if I've got this wrong, I'm sorry - hope Chris isn't mad that I'm posting this.)

In 1985 or 1986, a brilliant high school friend had an invention.  One that he was well-known for throughout the school, and one that got him both giggles and stares of curiosity or admiration.  He opened up the bottom of a pair of his trademark Nike sneakers, cut holes in the sides of the soles through which he inserted small, colorful lights, and hooked it all together with pressure pads and batteries.  Yep, the prototypes.  The originals.  He entered a contest sponsored by Duracell, got Nike to sponsor him, and won a nice little sum, especially to a high-schooler.  I remember attending a dance in the school gymnasium.  The lights were down low, the music was blasting, and I could spot him easily by the light trail he left as he walked across the room.

But then what?  Well, I'm a little fuzzy on the details of the rest of the story, but let's just say it involved some youthful ignorance regarding patents and an ambitious and unscrupulous employee from Nike.  That employee jumped ship and went to LA Gear to shout his idea from the rooftops, and the rest is history (okay, I think I have a few of the facts wrong here in the telling, but it still doesn't remove the true origin of the shoes).  In 1992, one of LA Gear's most successful lines, LA Lights, was born.   

So yes, I feel a bit of guilt.  And I haven't asked him, but I am curious to know if he's ever bought light-up shoes for his two kiddos...

Wordless Wednesday: The Whole Dirty, Beautiful Truth