Hurrieder and Behinder

Isn't there a saying...the hurrieder I go the behinder I get?  Alas, that seems to be the functioning level this past few weeks and I think it's continuing...

I'm sorry if I was a bit melancholy last post, but I made it through.  We all did.  The boy walked across the stage, looked like a graduate.  Looked SO MUCH like a graduate.  We did the party, he got lots LOTS of money in cards, friends and family were so very supportive.  I got a little teary eyed, suprisingly--not for him, but because I wanted my Mom there.  I wasn't expecting that issue to come up.  I kind of sobbed for a bit, after the ceremony, when my Dad said, "Your Mom would have been so pleased."  Sigh.  But that's another melancholy post for another day. I was so overwhelmed with all the stuff to do for the party that I forgot to figure out what we were going to wear...I SO threw together old outfits for everyone, but it worked out okay.  I would have loved a new outfit, but maybe for the next one, I'll remember ME too...

So school is done for the year.  I now have a graduate, who is an "Intern" in the fall, a Junior, and a 4th grader.  I am going to blink and I'll be the one shuffling along, sitting on park benches...

Aetna and Medicaid for our state do not mix.  Think I've mentioned that before.  Oooh, the lists, the phone calls, the frustrations...the choice words. 

And so...the paperwork continues...the city's Regional Center for the disabled, the Vocational Services, Truman Medical Ctr...all require paperwork before the Internship.  And a TB test...oh, AND the boy is taking a serious, intense acne med that requires a monthly dr visit, and blood work -- and did I mention we have a dance recital coming up for the girl, it's a three day event...dress rehearsal, then two performances to a packed house...Plus...I have two dissertations to format (my part-time job from home...) and Four more Royals games scheduled to work...oh and THEN...my old job is asking me to cover the 8 weeks of maternity leave -- and a vacation to plan in FL, all this summer-- if I think about everything I am going to go nuts, which I guess is why I started this post with the hurrieder/behinder thought.  I am swimming in my head, and it's past midnight, and I have GOT to get it organized...and GO to bed!!!

Milestones

Graduation next week for oldest fx boy.  Bittersweet moments.  I think having a disabled child do some of the 'normal' things leaves me in a strange funk.  It brings me head on with reality -- the disabled reality...in fact I am colliding this week. Seeing what everyone else is doing...graduation parties, inviting friends, etc.  Not one person gave him a senior picture.  I find that incredibly sad.  The special ed world is truly so different.  I know he passed out a few of his to those in his life skills class.

So I will be happy, I guess, that he is graduating.  We will go through it all.  Have a party.  Say good job.  Good job, we are proud of you (for attending basically).  Still reading at below grade.  Way below grade.  Low elementary grade on a good day.  Math?  Nope.  Counting money?  Nope.  Understanding time?  Not really.  Behaving.  Oh yes, usually on good behavior.

But can he live without support?  Of course not.  Can he drive?  Of course not.  Can he understand any of this?  That, I do not know.  He is a puzzle to me.

And of course, there are high moments:

He 'won' his category at State for his metals class chair.  And it IS neat.  But I know his teacher REALLY helped him.  And his category was the special ed category.  So, it inflates his ego.  Which is probably a good thing.  We all get knocked down enough.  But honestly.  And really, if I am going to blog to myself here.  I must be honest.  It is always a happy, with a bit of a heartache.  Because I know he didn't really make it.  I know the judging criteria was different.  I know...and I have trouble being truly, in my heart, overjoyed for him.  It's those dark heart moments that I, as a parent of a disabled person, have guilt.  SO. MUCH. GUILT.  It's almost scary to put down.  But most days, we can live in an oblivion, a 'good job' for doing your best.

And YEA, yes, you are going to to the internship!  WOW!  But in my heart, it is still--but you are NOT going to get to go to college.  I'm not sure how to give up on those original dreams...yea, I can read the Holland poem.  We aren't in Italy, we are in Holland...but it's those MOMENTS in life.  Those milestones that creep up and slam me hard that they are disabled.  SO disabled.  SO not normal.  I think I hide it a bit, in my world and in my heart.  Even watching TV, the commercials about kids graduating...etc., what kids need to go to college...sigh.

So that's how it really is sometimes.  Happy.  Doing it all. Making it as normal, normal as it can be for him.  And then a life milestone hits hard.  Hits my heart. And so I fake it.  Today, this week, and probably forever.

H-

Project Search, and etc.

Learned about the new info for the oldest FX boy.  Went to the presentation.  It's called Project Search.  We are SO applying!  I hope I hope I hope he gets in.  I hope I hope I hope he loves it.  It's a little nerve-wracking for him I think.  He had wrapped his head around the staying at high school one more year...but WOW is it a GREAT opportunity!  Training, intership, all with a GOAL of a job!!!  We have to have the application in on Tues, interviews on Thur...and we'll know pretty quickly if he is in or not.  They will be picking between 10-12 special ed students from our school district.  I know five from our school are trying...there are three schools. And one school has quite a bit more special ed students, so he may not qualify.  The diabetes thing could hurt his chances if they can't handle the medical supervision part...I can't worry about that though.  If it's right for him, then it will happen.  I have to believe that or I will go bonkers.

The younger FX boy was there too.  Listening to the whole thing...but looking like he wasn't.  Took out his handy dandy notebook and wrote 'snakes' on a few more pages in it, and never once looked at the speaker I don't think.  Did a few fake yawns and stretches, like he does when he has anxieties. (And a side note, just found out he SLEEPS with that notebook in his hands every night.  Didn't know that-but I went in his room the other night in the middle of the night during a storm to make sure there wasn't water leaking in...have had trouble with that it the past, but it was okay.) When the presentation was over I asked him if he thought he would like to go to this program after high school.  He said "Yea, I'll try it!"  :)  Actually he might even benefit MORE from something like this.  I could see him in a situation like that, doing repetitive jobs, and endearing himself to others, telling jokes, etc.  He is a FUNNY comedian.  Truly.  I'm not even biased.

And so...Special Olympic track meet tomorrow.  It's going to be COLD again.  For the billionth time.  I don't know WHY it has to always be so dang COLD.  We have warm days sometimes in February and March.  And then April always comes back to haunt us with winterish weather.  Scheeesh.

H-

Once again a picture not related to anything.  

FX in our homefront news...and other thoughts

Neat opportunities with the eldest FX boy...

Just a little boy picture from ages ago...I must be nostalgic as he reaches this milestone.
 He used to love his little cars.
 He still has them. 
Just doesn't get them out much anymore.

 

He is 'graduating' this year from high school. 

He has two options after the ceremony--(he doesn't actually get his diploma until he does one or the other, but no one will know--he gets handed what all the kids get handed because I understand the diplomas are sent separately.)

1.  He can go back as a 'super senior' and be a mentor to the freshman, run the 'life skills coffee shop' as the 'manager', continue to do the life skills classes, and add some more fun electives to the mix since he has met the requirements for graduation.  For example, he had already met his PE requirement, and so this year he had to take the modified government class, and couldn't do the Special Olympic bowling class every other Thursday--he hated that!  If he goes back under this option, he can do the modified PE class and go bowling.  And he mentioned he would like to take woodshop and art.  Also, the teacher said Vocational Rehab people would come and help him out to look for after-school job/life options.  (Of course, they said that would happen his Jr. year, but then they didn't have time...So then they said his Sr. year, and again...no time!) Hmmm.

2. There is a brand new 'internship' available in our school district for these special kids who are graduating.  I just got a call Monday about it. Apparently our district got grant money from the government (I'm sorry I can't remember the name of the program...info is still supposedly being mailed.)  It works something like this:  the kids will go to an area hospital and have a class in the morning, and then in the afternoon, they will job shadow/learn a job within the hospital.  There are three units throughout the year, so they will 'intern' at three different areas (shipping/receiving, food service, housekeeping/maintenance).  When they are done--INTERN experience!

Can you tell which one I like better?  Oh yea, number 2!!!

So here's the rub.  He is NOT excited about number 2.  There is a meeting next week where we will learn more about it.  He can often be persuaded, however--if we really want/think number 2 is a better option, we will push a little.  Not too hard, but a little.   And, another sticking point is he has to interview!  Yes, he has to fill out an application and interview!!!

***
FX Boy #2 -- has gotten amazingly interested in Theater!!!  He has a WONDERFUL teacher, and he is in the mainstream theater class.  He has signed up to be on the prop/backstage crew for this upcoming play.  He is OVER the moon happy!  Can't stop talking about it!  Keeps reminding me that I am going to have to pick him up late from school.  Or take him early for the rehearsals, etc.  And that I am going to have to pack him SNACKS! I've got it!  And have shown it to him (each instance!) in our family calendar.  He is obsessed--his routine and schedule is so important for his anxiety levels (as it is for many of our FX kids)!  But all in a VERY, very sweet way and I adore him for it.  He is a tender boy, and so very happy to have this opportunity. 

Back when this one was little, he was always getting sick and needing breathing treatments. 
Which turned into electronic game time, just to get him to sit still.
Has completely grown out of it!  We haven't used this thing in YEARS.
 I think it must have been a muscle tone issue--he just couldn't cough well. 
We'd hear it rattle, and he just couldn't get it out! 
Again, just being nostalgic.

***
Medicaid Update -- So FX Boy #1 has Type I juvenile diabetes.  Has had it for five years now.  The childhood kind, not Type II (the I'm fat, old and out of shape adult kind I will probably get!!!)  So all these years we have been paying a LOT for his insulin.  It started out at $25 (our copay) per vial--which lasts 7-10 days, depending on how much he uses (i.e. how much junk food he eats).  Over the years, our copay has increased to $40 per vial.  So we get him on Medicaid and guess what...our copay is $.33 per vial.  You saw that right.  Cents.  As in thirty-three cents copay per vial.  I SO did the happy dance.  Right there at the pharmacy.  I think know I went a little vertical jumping and clapping!  (Oh the humanity!)

***
Girl has another dance competition.  (Fourth one this year!)  This time some of the extended family can come!  I know, unbelievable!!!   :)  She is excited.  Two more competitions and the recital.  Then this year is completed!  She has really upped her skills this year--she showed me some of her tap, jazz and lyrical dances for the recital (not competition numbers, I've seen those!).  First year for lyrical, and I really loved it!

Since I'm all nostalgic with the boys...here's the girl at the same time. 
Food=High chair bliss!

***
Computer had a major meltdown.  Had to buy all new.  Now using Windows 8.  Not in love with it yet.  So, so very different.  Change is harder as I get older--Bwhahaha!  I've had to fuss, fuss a lot with it, and it's still not all set up how we need/want it.  Needing patience!

Happy Friday,
H-

Alone

I am so rarely ALONE in my house.  Always a kid...or the Man of the Place is here.
And when I am...it is so strange.  So peaceful on the surface.  But my MIND goes nuts.

I try to think of EVERYTHING I must do, can do while I am by myself.  And yet, I piddle too.  A little of this, a little of that.  A little blogging...and a little bit of picture sharing, not in order but hey.  They are uploaded.

Before the Game - New Warmup Jackets!

At the Game with Neighbor Boy and the Mr.

The teams after the game.

My Boy Practicing Before

Blurry action shot.

Our crowd.  Relatives, friends, past teachers!!!

"Good Game, Good Game"

Letter!  (For modified work, of course, but we are still VERY proud!)

Girl with her Second Place Dance Trophy

Oh.  And if you're wondering why my hair is half gray/half not gray.  Taken care of now.
If you know me, you know I don't keep my hair in any one style/length, or color for long.  Just look to the right over the years.  I get bored.

H-

Another week

Dance Troupe Big Sis and Little Sis

The girl had to take out her earrings for dance competition. So she could wear the costume clip-on earrings.
Hoodee hoo.  What an ordeal! 
She WILL NOT put her regular earrings back in.
I fussed a little with her about it and then just gave up.
It's her ears.
So the holes will close and it will be not a daily discussion: clean your ears, twist your earrings, blah blah.
I told her if she lets them grow back, I WILL NOT get them pierced again. 
I will not be involved. 
She will have to pay for it, and take care of them.
Perhaps she will never do it.
But I am guessing peer pressure will someday be involved...

She fell during her dance solo on a double turn...but got up, smiled and kept going.  I was disappointed of course, but she handled it famously.  She can ROLL with it sometimes so much better than I can.  After I asked her if she was upset, and she said, "No, at least I fell gracefully."  Placed 2nd in her solo, behind the girl that always beats her.  (It's ok, she IS better!)  Also performed 3 group routines.  I have fun watching.  It's a pricy hobby..a little stressful for the mom backstage (costume, makeup, hair changes...).  Probably am living my childhood over.  Well the childhood I wished I had had.  ALWAYS wanted to take dance.  Parents did not let me.  It wasn't 'practical'--"What would you do with it when you are an adult?"

I NEED my own computer.  We have just the one (and it is a bit old).  Five people after it all the time...and I WORK from home, ON the computer!  Gosh I am emphasizing a bunch of words today... 

We finally have the oldest on SSI and medicaid health insurance.  (The health insurance is not called that, but the name says our state, so in the sake of privacy for him, I won't mention it.)  It has been SO helpful to have a bit extra.  And the $ helps the diabetes supplies cost.  We were a bit slow in filling out the paperwork.  It was on my list for quite a while.  But once we dove in, it really wasn't that bad.  If you need to do it, just do it!  I think I heard so many horror stories about how difficult it is, I was dreading it!  I will SO be on the ball for kid number two...when he is of age, we are applying immediately!  If they have fragile x--well, there really is very little they can argue with you about--they qualify!

Speaking of boys, fragile x, and all that...the oldest has been talked into agreed (yea!) to continue high school for two more years.  In our district, it is called "Super Senior" for the kids in the special ed program if they want to continue (they can up to 21 yrs).  He still will take some academia--like reading, but will be helping out running the 'life skills' coffee shop, and some fun classes.  We really had no idea what we were going to do with him after graduation...so this gives us some time to work with vocational rehab too...I'm sure we will also do it with boy #2...truly I think they will miss school when it is over.

-H

IF ONLY

...I had my own computer.
Then I wouldn't have to share with the kids AND the Mr.

...I had normal, healthy boys. 
Then...well, the Thens would be endless.

...I didn't like baking and eating what I baked.
Then I would be skinny.

...I liked to exercise. 
Then I would be strong.

...I had a mom still alive. 
Then...well, the Thens would be endless.

...I quite worrying about the If Onlies.