How to…

Prevent Swine Flu.

courtesy of my Mom…

Special Needs and Kindergarten, the parent’s perspective

As anyone who has read this blog knows, the transition from the school Isaac was at to this one has been nothing short of an arduous journey. When you are the parent of a not-so-obvious special needs kid (you know, one that looks the same as everyone else but is a bit left of center.. and isn’t obviously autistic), it’s a given that at some point, you’ll just want to throw your hands up and scream as you wonder if anyone actually gets it. Does anyone read the reports? Does anyone really pay attention to what your child actually needs versus what’s worked with 95% of the other children they see on a daily basis? Will the staff and teachers at the school STOP patronizing you and actually treat you as part of the team?

It becomes this brutal dance that no one really wants to dance. In a lot of ways, I feel like I’ve got that awful pair of shoes that looks like an absolute knock out, but hurts your feet to the point of cutting off your circulation. It’s just like the time I drove to an interview that was a serious hike away and the shoes just looked AWESOME with the outfit, but I drove in my Hello Kitty slippers because I couldn’t stand the way they felt on my feet.

Right now, even on day 4 of kindergarten, I don’t know if I made the right choice sending Isaac to a public school. There are times I think it’s wonderful-like the way he gets on the bus and rides like a champ- and times I think this is just the worst thing ever created-like when the school calls and freaks me out by NOT leaving a message because it’s just not that big of a deal.

There are times I wonder if they’ve ever picked up Isaac’s IEP report and really gone through it or just wanded  bar codes for goals based on some stupid basic screening that he didn’t feel like doing at the time.

But then again, none of the private schools I visited felt just right either. One felt too one sided-one behavioral approach fits all-another was just all sorts of wrong. It was so wrong it made Isaac shut down for 2 days. He spent 100% of his OT session in a barrel. He was that upset.

I knew when I selected his preschool that it was just right. It was the perfect fit for him. Now, I’m not so sure if I’ll ever find that perfect fit for him again.  Where do you put a smart, funny, goofball of a kid who needs sensory supports to function through his day, but can’t stand to be away from his friends?

There are so many questions and not enough answers.

I’ve got lots of people telling me to wait it out and things will get easier-this pair of shoes I’ve got on right now will do some stretching and break in. I hate to say it, but I don’t know if that’s what will happen or not. I’ve got the teacher telling me that he’ll settle in, but it will take time. I’ve got my child pulling shenanagins on the staff-when do I tell them that this is garbage and when do I let them figure it out on their own-if they will figure it out without me having to tell them. Then I’ve got me and my knowledge of what is correct procedure and compliance and what is not.

Welcome to Holland. Seriously. Welcome to Holland.  I’ve found some of the nice things about the place, but the wooden shoes suck.

How I stopped complaining and learned to sort of like suburbia.

The first soccer game of the rec season was today, and it was quite the sight. Isaac belongs to team Kiwi…Yeah…BRIGHT green. Seriously, bright green.

See?

We had the AFO’s that Rob had so awesomely rigged to hold the shin guards…

And yet I was totally afraid.

Of what?

Well, remember last time we tried to play soccer? Isaac ended up getting beaned in the face intentionally by another kid. He was tripped, made fun of and asked to do things that with AFOs, are impossible. It went so poorly, I didn’t know what to think. Those parents were out for blood, guts and total other team annihilation. NOT my idea of how beginning sports should be!

Plus, I remember when I played sports, it was the parents again who were horrid.

So, it was with huge trepidation that I stepped on to the soccer field in the E. Nowhere suburbia that I live in.

Turns out, my worries were for nothing.

The coach explained to the kids on team Kiwi that their objective was to play a bit and have fun, take turns and possibly get the ball into the net. Kindergarten-3rd grade teams don’t keep score or win-loss records. It’s all about coming out and having a good time in the fall air.

Coach Greg swapped the players out as much as he could, so everyone could play in their team dresses shirts.

Note-whoever ordered the shirts for the kindergarten division-YOUTH LARGE  (size 12-14) is a dress on 100% of kindergarteners!  Just sayin.

Isaac got to run and chase the ball

Play goalie

Hear the other parents cheer for him, tell him he did an awesome job, even though he missed the ball, and learn the basics of good sportsmanship.

Coach Greg got them all lined up at the end of the game (by this time it was drizzling rain. My camera went back to the car..) for the post game handshake.

He had them play follow the leader with their right hand out (and they had to switch to their other right!) and high five and tell the other team good game.

Ok, so suburban fall soccer at least for now isn’t so bad. I at least got to stop complaining and sort of like the E. Nowhere I live in. It’s got some decent things going for it!

Little Boy, Big School

Today was the first day of Kindergarten. The bus comes mighty early, so Isaac was ready, excited and all raring to go, way before I was.
He insisted on wearing his Darth Vader shirt-that’s my little Star Wars boy-and his new hoodie, and brought the red backpack that set off the first fiasco of the school year.

Then, we heard it-the distinct rumble of the school bus

and the little boy, who is off to the big school to begin all sorts of new adventures cheered!

Got on the bus like a pro, sat right behind the driver and went off.

No, I didn’t cry. He was too happy to go off to Kindergarten-snack, folder and red backpack in tow, to meet new friends, have new adventures and finally share what a neato kid he is with more people than just his little world.

So, my little boy is now a kindergarten kid in a big school-and he likes it.

Did you read the letter that got sent home?

Yesterday was Kindergarten orientation. I’m reserving all comments, because right now, they’re totally clouded by the fact that I’m not sure what to make of the school, ect. Lots of things to really take into account, and I’ll have a better idea of what I’m handling and dealing in by the end of next week. But, I do have to say that the classroom teacher emails back FAST! That’s one point in their favor there…but I digress.

When we got the notice for Kindy orientation, there was a whole section about how not to bring siblings, because this was a time for parents and their kindergarteners to really get to know the room, meet a few people, ect. For cripe’s sake, this was done in groups of 5-6 students at a time. So, this truly was small group stuff.

Well, in wanders this one mom and her Kindy kid…and TODDLER SIBLING IN TOW! Oh, my. Lovely. Mom lets little one run roughshot and allows her to get into the dramatic play area, ect. My highly distractable child was quite the picture trying to get over there when there were things to be done. ARGH. But, he did it, and did it semi OK.

I know all about no babysitters. I know. But if there is a specific instruction NOT to bring siblings, ect, it’s there for a reason. For cripe’s sake, one family sent GRANDMA with the kiddle because she couldn’t make it. Argh.

I just wonder if some parents don’t even read what gets sent home.

The back to school roller coaster

There’s a lot going on around here. With school starting and the like, it’s been one heck of a ride the past few weeks.

When you have a special needs child that goes to kindergarten or even changes schools, it just becomes that extra bit of twitch factor that other parents don’t have. Add that to everything else, and you get a back to school roller coaster that just doesn’t slow down.

Personally, I’d like this coaster to pull into the station, but I know when it does, I’ll complain that life is boring again (especially here in E. Nowhere) and I’ll wish to be back on.

So, here’s the latest roller coaster set of moments.

Now that Broken Bed fiasco 2009 has ended with a successfully fixed bed, we can all laugh at the latest piece of delusion that came through my mailbox-
a card thanking us for our purchase.
No, not kidding.
a week of screaming, sobbing and being totally glad that the boys weren’t here so that the bed could get fixed in peace, and we get a postcard for a year old bed? What?
Whatever.
Will I patronize this store again? Most likely, at the location that gave us the most help. I, however, will not deal with the person who shares my name and her customer disservice.

Since coming back from the outlaws in Arizona, my darling shrimper has been nothing short of a pill. Massive pill. Rude, spoiled and entitled acting. That’s what happens when you hang with the outlaws too long. I spent the first week back retraining him that 1) being rude will get you nowhere but your room, with all priveleges revoked, like your television viewing, and 2) you may not have everything you see, control the agenda to your heart’s desire, or speak to me like I’m the hired help. Again, this will get you nowhere but your room, with no television.

And no, a 45 minute meltdown will STILL get you nowhere.

Charming, isn’t it?

Then, Shrimper thought it would be a good idea to explore the cabinets on the top of his wall. His room has built in cabinets, and these cabinets are almost at ceiling level. I get a call at work on my cell phone, and hear that he’s fallen off of the cabinets and hit his face. Yes, huge bruise and scrape on cheek and neck. Great way to show up to the first week of Kindergarten-bruises and scrapes. Joy.

And then, we had the biggest ride of all. The medication ride. Isaac’s ADHD meds are insanely expensive. Hardcore expensive. That’s even WITH insurance. So, we found a few coupons to cover at least one of the copays. That’s when the pharmaceutical companies began their rain on my labor day weekend. Our coupon was declined at the pharmacy, because we had used one, and it was one per person, per lifetime.

what? Really?

So, we come back, call the doctor and explain the situation. She comes back with a card that gives us 50% off of copays for 10 months.

Ok. we can get behind that.

so, I drive all the way down to the doc’s office, and then all the way back home so we can activate the card and get the meds, as we’re down to our last 2 pills and two pills and a bunch of days doesn’t add up around here, especially with kindergarten starting.

Let it be known that I disclosed what happened at the pharmacy to the doc’s office. They assured me that this would be just fine and work well.

Yeah, it didn’t work. So, I spent a better portion of two hours dealing with Shire pharmaceuticals and their idiot staff. Here’s how it all broke down…

First step-talk to customer service and explain the situation. Get an extremely rude rep, who makes sure that she lets me know that this is totally my fault, and that the doctor could NOT have told me that this card would work.
Finally, I get her to give me the number to patient assistance, and I thank her for her unhelpfulness.

Second step-Call the number that witch 1 gave me. Get understanding person who unfortunately confirms rude witch’s stuff, but hears me out and issues us a “second use” card for the price of the perscription. She informed us that the card wouldn’t get here until Friday. I also explain to her that the cost is prohibitive to us, even though we have insurance. She puts me through to patient assistance, where….

I get the most sarcastic, obnoxious rep ever. I explain the situation, explain the whole thing and he starts to get sarcastic with me. He tells me I have to fill out an application, and me, knowing that we’re almost down to our last pill for the shrimp, says “I don’t want to be filling out 80 yards of paperwork just to be denied.”

Jerk says: “well, if you mean one page equals 80 yards, than yeah, you’ll be filling out 80 yards of paperwork.” and then he laughed.

I broke into tears and told him he wasn’t funny.

THEN he had the nerve to tell me that this process could take at least 2 months, because since we had insurance, we’d be automatically denied, and we’d have to appeal.

Really? Automatic denial? What the…

So, since we can’t wait 30 days, I ask if he is the final word, because he’s refusing to do anything. He tells me that even his supervisor won’t do anything for me.

This is where I finally lost it. I told him the following:
“Too bad. Stuff gets overridden every day. You don’t say another word to me and I want your supervisor now.”

I get the supervisor and she almost gets her head taken off with the following statement:

“well, if you had called yesterday, you wouldn’t be in this situation! This is almost 7 pm on a holiday weekend…”

Everyone knows how well that line goes over with me.

Let’s review here…this medication is a SCHEDULE 2 CONTROLLED SUBSTANCE. This means you MAY NOT get it any sort of early. So, like the bed fiasco, how were we supposed to know that this was going to happen?

I very politely took her head off reminding her of this fact. I told her that because of the nature of the drug and their lack of any sort of urgency in this situation, that my child is being made to suffer. She then put me on hold.

She came back and they’re supposedly fed exing the card to me by tomorrow (tuesday). Should be interesting.

Meanwhile, we had our “booster pills” here, and we’ve been giving them to him, and we’ve kind of noticed something…

Shrimper’s disposition has changed drastically. We’d been dealing with the “whine monster” and wondering if it was just stress from changing schools, ect, or if it was the meds. With a 5 year old, it’s hard to tell.

So, Shire may have f’d up in our favor…letting us know that we had a side effect that we just chalked up to something else.

I’ll be on the phone with the neurologist’s office on Tuesday.

Then, the last piece is that of meet the teachers/aides/therapists. I’ve been trying to get answers out of the school all summer as to meeting Isaac’s aide and having him meet the teachers, ect. AND the biggest question-who is doing resource room for him. This is just what happens with a special needs kid. I’m still at the top of the hill on this wild ride with this one, so hopefully, these are only mini hills that will end on Tuesday morning.

Umm, is it really September?

Seriously, I don’t want to be in this month. I’ve got a kindergartener (EEEEEEKKKK!) and all sorts of things to get done.

Blah.

But the upswing of all of this is that I’m going to (for the second year in a row..) be late for the faculty meeting.

Can we say trend anyone?