Friday, November 30, 2007

Joking With A Speech Therapist

I don’t regularly get the opportunity to pick Demetrius up from therapy, but yesterday was the exception. Since I was last in there, Demetrius’ speech therapist has gone from being a little bit pregnant to maternity leave to back to the therapy center. When she saw me she proudly talked about her baby, and how well mine is doing in his speech class. We went over a number of things, and that he has just gone through some testing, but she wants to compare it to his prior testing to gauge progress made.

She did mention that he has a hard time following her when she talks about concepts and speaks in long paragraphs…and that he loses focus at that time and she has to repeat what she says.

I smile. She says to me: “Oh, he does this at home also?”

Jerry: Well, I was thinking of something else.

Therapist: Does he do something else like that?

Jerry: No, well, I was just thinking….he’s just developing his ‘male’ skills. Do you know a male that talks with you conceptually and in long paragraphs? Do you have to repeat what you say to your husband regularly?

She stops, her look changes, and then she breaks out into a smile and says:

“Well, when we tell mommies this, they get worried. It seems that Dad thinks Demetrius is clearly developing exceptional skills.”

We both chuckle.

Well done my boy, well done….

Posted by Jerry in 19:05:58 | Permalink | Comments (1) »

Thursday, November 29, 2007

Some Photos Of The Family At The Turkey Trot

It was cold, no doubt…..


Maya was the first in from the 1K…see the pride in those eyes…



Then came Uncle Jimmy, D and Mommy……


Family Photo under the Giant Turkey. Grandpa, Mommy, Maya, Super D and Uncle Jimmy.  Everyone looks really, really cold (the kids also got medals! I got winded and a tee shirt…next time I’m running the 1K)


#213 is Aunt Francine finishing up the 10K.  Pretty good for someone with two broken toes!  See Grandpa behind her rooting her on…Daddy’s little girl….


Yours Truly finishing up

Posted by Jerry in 15:22:44 | Permalink | Comments (2)

Wednesday, November 28, 2007

The ‘Differences’ Have It!

I wanted to say to all of you that responded…thank you!  No doubt we all see our kids as having differences, versus disabilities.  That said, I am thinking out loud with as much time Demetrius spends in resource room, and the therapies he attends, and the times where he just can’t deal with the world and he retreats into his ‘bubble’ (when he is less responsive/lives in his own world)….well, that I am somewhat playing a semantics game that tips the scales in the direction I want it to tip….that being he is different versus disabled.

But I am allowed to be a cynic some days of the week.

That said, he’s not the only kid in resource room at his elementary school, nor is he the only one that has trouble with certain classes, or has a speech impediment, or some fine motor issues.  I’m in the technology field for a living, and I promise all of you, there are plenty of folks I’ve worked with that have great jobs and great lives….and I’m certain that they are on the spectrum (you may know these folks as adults in your life too).  Are all of these folks ‘disabled’?  No, but someone has probably classified them as different in their lives.

So I can also be a rational optimist too, some days of the week.  Lets see here….

He whines when we ask him to do his homework.

He flirts with his Mom when he wants to get his way.

He ignores his sometimes pest little sister.

He negotiates to try to stay up late, get more snacks, or watch more TV.

He doesn’t do what he is told and get toys taken away and has to go to timeout.

He wants to eat only what he wants to eat.

He doesn’t like to share the TV or the computer with his sister unless absolutely has to.

He wants every single toy advertised on Nickelodeon.

Hmmmm…..just how different is he?  Not too much…I guess. Laughing

Posted by Jerry in 21:04:50 | Permalink | Comments (1) »

Tuesday, November 27, 2007

Disability Versus Difference?

We had an appointment with Dr. Pakula this morning. We are trying to get Demetrius’ new meds calibrated (we don’t think he’s taking the right amount, so we are going to tweak it up to see what comes of that…) and we discussed a few other things.

One thing she said kind of stuck with me, she really doesn’t see autism for Demetrius being a ‘disability’ so much as something that just makes him ‘different’. Though I like this, and it something that I can embrace…I really didn’t have the time (nor did she) to press her on what she meant here… because the Good Lord Above Knows – with all the IEPs and therapies and constant struggles we have, it is certainly more like a disability than just a difference.

McEwen, Christoper’s Daddy, Marla..other regular readers out there…thoughts on your own kids and any observations from those of you out there that just read this blog but don’t have an autistic/special needs sprite running around your house….please chime in…

Oh, and Christopher’s Daddy, lets grab coffee soon….

Posted by Jerry in 17:29:11 | Permalink | Comments (6)

Custom Framing Comment

Yesterday I took a charcoal drawing Maya did in art class to be framed. I love this piece of artwork alot…I believe it shows her passion for art and her budding skill, and she’s so proud of it (therefore, so am I).

The framer came over to me and we discussed frames and glass choice….an older woman was standing in line behind me, and she admired the piece. I told her how proud I am of it, and that I couldn’t wait to get it framed and up on the walls.

The ‘framer’ asked me where it would hang. I mentioned that I didn’t know, may be the living room or up the stairwell might be nice (ultimately, this is a Kim decision, not a Jerry decision, but I can pretend, can’t I?).

The nice lady behind me said, “It doesn’t matter where you hang it, because it is special, and that makes its location one of the most important places your house, doesn’t it?”

I just looked at her and agreed, however… I just find the statement profound. So I thought I’d share. This is what age, expereince and probably a number of children and grandchildren teach you.

—-

I’ll be posting sporadically (I think) over the next week. My computer from work is on the fritz, so I’m waiting for a ‘loaner’ and once I have that, I can post more regularly. Until then, its only when I have time before putting kids to bed and finishing chores!

Posted by Jerry in 00:39:54 | Permalink | Comments Off

Wednesday, November 21, 2007

Two Guys, A Race, And A Thank You, I Think

Yesterday Kim and I caught up with a few couples we knew a long time ago, when we were newlyweds living in my parents converted garage.  One set of friends I knew professionally from work, the second set I knew the husband and wife from Jr. High. 

Both have had some hard times in their lives.  After catching up, I found one that grew up in a 2 bedroom and 2 bathroom apt. owns a couple of insurance companies and financial services consultancy. He has a great wife (I’ve known her practically as far back as I can remember) and four kids that attend the school my sister teaches at.  He’s building a new house and seems completely happy.

The other buddy is a guy I’ve crossed paths with throughout my college and professional career and bounce ideas and questions off of…he’s built a house south of the city here in Dallas that is of his dreams….his step-daughter is about to graduate from high school and he’s got everything he could want in his life. He seems, as they say here in Texas, “blessed”.

I couldn’t be happier for these two guys.

Sometimes, it isn’t just our autistic kids that live in a bubble, we do too.  We spend our time thinking about therapy and IEPs and…well, our lives. We are very focused on ‘us’.  It takes a lunch and a dinner with people you don’t regularly see to bring you out of your bubble….and you see just how great some lives have turned out for people who have had difficult times. It helps give me perspective on what I’m going through with Demetrius and my life…that often, the hard times lead to better times…and I’m not the only guy in the world that has/had some life issues to work through.  That makes me happy…and I don’t know if it has a flip to do with Thanksgiving or not, but it makes me breathe a little bit easier that me, and all of you, aren’t the only ones in a boat like this…and have come through okay.

——

I also had a race this morning, I didn’t come anywhere close to the time I had hoped to run it in….however, I am still thankful that I can run these races. After a number of ankle reconstructions and doctors telling me all the things that I can’t do…I really appreciate the fact that I can and will do this (among all the ‘stress release’ factors that running enables in regards to autism).  My times aren’t super fast, but that’s not the point, the fact is that I’m finishing strong.

Maybe all of this ties to the fact that I should be a bit more thankful in everything in my life, regardless of how hard parts of it are….

Happy Thanksgiving ‘ya’ll’ (I am in Texas right now…)

(And I ran 6.2 miles in 57:13, that’s still not a bad 9.21 minute mile..) Laughing

Posted by Jerry in 15:51:59 | Permalink | Comments (1) »

Tuesday, November 20, 2007

In Texas

Man, when it rains, it pours…..I tell ya, first Blog.com is out for a few days..then, I get to Texas, and my hard drive dies, no more Mac!  Thanks to Mom and Dad for having this sweet state-of-the-art Dell here at the ranch (but not a Mac). Thanks to Uncle Jimmy for sitting with me all day yesterday at the Apple store attempting to save data from my hard drive (as it died, how very ER-ish) to thumb drives.

The kids are reveling in being with the grandparents. Loving every minute of it.  Maya follows Nonni everywhere, and Demetrius attempts to talk everyone into letting him watch one more DVD, movie, etc….

We are a little ‘mis-dressed’ for the weather, its 80 degrees here, we have khakis and such, but didn’t bring with us the summer wear….its also screwing up with my running, as I had a much harder run than I wanted this morning before the big race on Thursday morning (cold front coming thru tonight, that should make things better).

The kids were also fantastic on the drive into Texas.  Really, zero problems.  One funny with Demetrius though, as soon as we hit Texas, he assumed Nonni and Grandpa’s house was just the next exit off the highway.  How hard it was for us when he’d get upset when we’d pass every exit and we wouldn’t get off the highway…for 183 miles.  Ugh.

Demetrius: Daddy, you missed the turn (small whimper).

Daddy: Demetrius, only 174 more miles…about 2.5 hours.

Demetrius: okay (goes back to playing with toys, watching movie, etc…)

Next Exit comes….

Demetrius: Daddy, you missed the turn (a bit bigger whimper).

Daddy: Demetrius, only 169 more miles…about 2.5 hours.

Then, we thought we would stop for ice cream treats about 150 miles from Dallas in Longview….

That may not have been our best move on the trip…hopping them up on sugar with just a few hours left really kind of made the remainder of the trip interesting….Sealed

Posted by Jerry in 16:14:32 | Permalink | Comments (1) »

Friday, November 16, 2007

Trip To Texas

There seems to be something wrong with my blog hoster, blog.com.  Nothing I’ve posted over the past 48 hours has shown up. Maybe this one will (I hope). So I apologize for this (out of my hands).

That said, the family is getting the itch and the excitement is brewing to get on the way to Texas for the Thanksgiving holiday.  It’s been a long time since the whole crowd has been to Grandpa and Nonni’s house. In fact, Maya says she doesn’t remember what their house looks like (she does remember the beach house we rent during the summer), so we are, obviously, way overdue.
 
The clouds before the sunny day here is that we are making our first ‘really long single day’ drive from Atlanta to Arlington, TX (approx 10-12 hours) on this trip.  Now, the length of the trip isn’t so much the issue (we’ve taken this much time to get to Nanny Joan and Poppy’s house in Kansas before), but the fact that it will be so monotonous (those other trips involve flying in planes, running around airports, eating at restaurants – really cool things).  We’ll have DVDs, headphones, books, toys…but that will all get old at some point.  We’ll head out early, so that the kids sleep and zone out over the first few hours, but still – we don’t know what looms in front of us in terms of getting irritated at each other.
 
Maya and I talk about the ‘long trip’ and she grimaces.  I remind her about the DVDs, etc… and it appeals to her a bit more.
 
She then says to me, “and we can talk to each other.”  Now, I love my daughter deeply.  However, this statement makes me cringe a bit – anyone that knows this wee-one knows she can go on talking, and talking, and talking… without ever stopping.  12 hours of Maya being chatty?  Spelling sight words constantly… mixed in with TV talk from Demetrius…
 
Who exactly needs the headphones?

Posted by Jerry in 20:23:42 | Permalink | Comments (3)

Wednesday, November 14, 2007

A Few ‘Interesting’ Photos From The Weekend


Here is just a great photo of Demetrius from his last practice of the season. I don’t see as much David Beckham (pretty boy) in him as much as I see a great workhorse defensive midfielder…something more along the lines of a hustling Bundesliga player who could tackle you straight up and seperate muscle from shin bone while not flinching at all….or, just a 7-year-old boy that really wants to know when practice is over and he can get an ice cream cone. One or the other.


Here they are: the fearsome Cheetah Girls. You wouldn’t know it from this picture, but these cute piggy-tailed blondes won every game going away, about 15-3. They are head and shoulders bigger and faster than any of the other teams. Of course, they have no concept really of winning and losing, just halftime and end of game snacks. Why are they so good? Simple – only two girls are the oldest in their families. The rest are little sisters. Feisty and fighters. Enough said. The Cheetah girls, mostly blonde and taller than the competition, would also do fine in the Bundesliga.


Here is Maya and Coach Wagner. Coach usually has the girls run across burning hot coals barefoot to toughen up their feet…before they start kicking the balls. Tough feet, tough mind – feel no pain. Either that or they sing silly songs from Disney movies during the warm ups. One or the other.

———-

Now, this, well, this is something else.

Right now, AT&T is upgrading the phone lines in our neighborhood…digging holes in all of our yards. There are probably fifty or so workers, foremen, engineers in the neighborhood. Lots of trucks with lots of equipment. But these three pictures take the cake, and show how sad some things can be.

This is an actual horse trailer. Yes, the kind you haul horses in to shows behind big Chevy-like trucks, etc…as you can see, from the first picture, it is filled with lots of equipment that guys would use to lay down new phone lines, right? Cones, wires, boxes, etc…so, you think it is equipment that is only being transported in this horse trailer? Wrong.

This morning, as the trailer is being parked two doors down from our house, a number of hispanics, the guys doing the back breaking hole digging (in Georgia red clay that hasn’t seen rain in who knows how long), are actually transported in, and hop out of the trailer and dropped off to do the dirty work. No joke. Like they were animals. No joke. Kim said she saw them park the trailer and the guys get out. Demetrius and I took Buddy for a walk and a few guys were in there eating a late afternoon snack yesterday, I thought that was weird.  So when Kim told me what she saw, it just clicked.  Holy cow!

C’mon AT&T…they might be day laborers, they might be just barely legals (if at all)…but I think it is way bad form to transport folks in a horse trailer to a work site. If you are sub-contracting, AT&T, you might want to just check out this vendor of yours, because our neighborhood is pretty dumb-founded that this is actually how you are treating your workers.

Still don’t believe me? Here are a couple of more shots of the trailer:


Heck, they don’t even put an AT&T logo on the trailer, just the ex-owner or owner renting the trailer out.

So very sad. Yea, Kim and I are liberals, this about takes the cake on one of the more surprising things we’ve actually seen. Put your workers in a horse trailer and haul them in. Jeez.

Posted by Jerry in 02:28:30 | Permalink | Comments (2)

Monday, November 12, 2007

A few things

Saturday was the last soccer game of the season for the boy (and girl). Last game of the season and the coach tried a new tactic – Demetrius could play as long as he wanted, and playing basically a player short wouldn’t penalize the team. This is what playing a team previously will do – the coaches of the other team remembered Demetrius, and how basically harmless he is to the flow of the game. So Demetrius wandered on and off the field at will. Now, he stayed on the field most of the game, because one of the team dads told him that if he got the ball and scored a goal that he could eat all the donuts he wanted after the game (donut party after the last game of the season).

Well, he didn’t score a goal, and he really didn’t mix it up, but he did try to kick the ball once that bounced to him and he was a bit more engaged than he usually is on the field. A couple of the boys tried to get him to run up and down the field with him, and he ran along with them. Donuts, clearly, are the right motivation for this child. Now we know. ☺

After the game, at the party, many of the parents walked up to us and said some great things. The kind that makes wives cry and dads work to keep from welling up.

“We are impressed at how hard you two worked with Demetrius to keep him involved with this. That was great to see (one even told Kim that it bordered on inspirational in a daily live sort of way).”

“Our son hasn’t been around special needs kids and was a bit scared when Demetrius would talk to himself, and now he sees Demetrius is just another kid, but a bit different. That’s great for us, thank you.”

“It seems that Demetrius had fun. I’m glad he played on the team. Will he be playing with us next season?”

———————-

Daddy (after reading to Demetrius and talking in bed): Demetrius, did you have fun playing soccer?

Demetrius: Yes, I had fun.

Daddy: Do you want to play soccer again, or do you want to play baseball (Miracle League) again?

Demetrius thinks for a minute (he’s also a bit tired)…

Demetrius: I want to play soccer again, they are my friends.

Demetrius, sometimes your very direct responses are all that ever need to be said.

———————-

While he says he enjoys it, we know to a certain level it is incredibly stressful for him. When we go to Maya’s games he runs as far as possible from the field and the cheering parents. He’s better with his headphones, but still…

And he threw up in bed Saturday night, but he did have a donut and pizza party and there were a lot of hands over the ears and twirling of the hair…so a stressful day. What’s the balance here? Hard to say for this kid….

———————–

Kim had a show yesterday for some of her artwork, so I took the kids to their church school classes. This in and of itself isn’t worth blogging about, but one of the things that really get me down is when I meet people for the first time is their comments to me about Demetrius. ESPECIALLY WHEN THEY ARE TRYING TO BE POSITIVE.

First, I should say I’m not the church going type. I’m a big cynic about organized religion, among other things…. but this isn’t a blog to discuss that subject. So I’m not heading to church with Kim and the kids on Sunday mornings. It’s not like that famous Norman Rockwell picture (I’m usually doing the yard work then), but we have a détente in the house in regards to this choice of mine.

So yesterday morning I meet a number of parents who either know Kim from her activities, have kids in activities with our kids or meet the church school class teachers for the first time. I shake hands and introduce myself. Or they see us in the hall and come up and introduce themselves. Let me state emphatically here that they are all gracious and positive. However, this is one of those wide gulf things between the world we live in and the one they live in.

Parent/Teacher: Hello Mr. Grasso, I’m XXXXX.

Me: Nice to meet you, I’m Jerry Grasso.

Parent/Teacher: We are so glad Demetrius is in our XXXXX, he’s a great kid and he did really good today. He paid attention and even answered some questions. We are so glad he’s here.

Me: That’s great! He loves the XXXXX, thank you for the feedback and kind words.

We each go on our ways. I try to be tough, but in my quiet moments I stew, seethe or just get depressed about these conversations.

The conversation follows a path about this child’s differences. It is pointed out that he is a ‘good’ ‘sweet’ or ‘great’ kid. I know this. Why are you telling me this? Why are you making an emphatic point of this? What do you think when you first meet him, or find out he’s autistic or when he does something ‘weird’? You have fears about him, don’t you?

I think most adults give kids the benefit of the doubt, that they are good kids until proven differently. However, they don’t know what to expect with special needs kids, therefore, it seems to me, that this is a pleasant surprise with Demetrius’ demeanor. It needs to be pointed out – to me, his dad. I wouldn’t make a big deal about it except this is almost NEVER the case when I meet parents for the first time who interact with Maya.

“He did really good today” is a staple statement in the life of Demetrius. Also, I don’t prompt it, it is simply offered to me (minus school/therapies where we need this for the obvious reasons). What is the assumption here? That he is going to sit and stare at the wall and drool on the table? Granted, some days it seems this way, but the kid just needs a bit of help and he’ll do the best he can at everything he tries. No different than any other little boy or girl.

I know some of this is a confidence issue on their part. They’re volunteers and certainly giving the best effort to work with this child, and not trained to be a special needs educator in any shape or form. If I just got this randomly, once in awhile, I probably wouldn’t react this way to it, but since I get it every time he’s in a new situation or I meet someone for the first time…. well, it’s a bit of a burden isn’t it.

The burden? The burden that there is something wrong that has to be proven to be either minimized or disproved in his behavior and actions. That special needs kids do really badly, versus really good, most of the time? We know that’s not the case, but the barriers between the neuro-typcials and the special needs families here are often so clear that they are more than figurative or just the elephant in the room. They truly exist in the very first statements people utter to you, the parent of the special needs child.

It also makes me worry for the boy. Does he feel like he’s being treated differently? Or is this something that, unfortunately, is just the way it is in his life, so he’s accepted it and doesn’t even recognize it? I wonder.

Posted by Jerry in 15:16:04 | Permalink | Comments (5)