Rough week.

I’ve mentioned before that Kim sees and hears so much more than I ever will in regards to Demetrius and other kids. I’m somewhat in a cone of silence, comparatively. But after a soccer game, a soccer practice, and Cub Scout den meeting…..I’m a bit roughed up.

Feels kinda like you’ve gone from the JV to the Varsity. You know the step up is big, but you aren’t sure by how much until you are in the thick of it.

So I have been told directly, listened to boys say to my son, or overheard them say:

• Tell him not be so stupid and weird during the game like he was at practice.
• Demetrius doesn’t try to play, because he is stupid
• What is wrong with him, is he retarded or something
• At school he can’t play by himself, he doesn’t know how. That is weird
• My dog runs off like he does. But our springer is a dog.
• Why does he make noises? Is it because he is different?
• He’s not very good. He shouldn’t play soccer if he doesn’t want to kick the ball.
• My mommy said he’s not a regular kid and to be nice to him

I also watched two boys in line to do shooting drills in soccer throw the ball off the back of his head and laughed when he just looked around, smiled, and squaked. They stopped, I think, when the felt my glare on their shoulder blades (if a look could draw blood).

I can’t imagine what is shakin’ and rollin’ at school when the teachers aren’t around.

A few of these comments (and certainly the ball throwing) were malicious… but just little boy malicious. Some of the other comments were just kid observation questions. Like when a neuro-typical asks why a man has only one arm when at a restaurant. Embarrassing enough, but just an observational question.

Of course, a lot of the ouch doesn’t come from the questions and taunts themselves as much as the realization that he doesn’t know he is being made fun of… he is just happy to be out there with them for the most part (unless the ball is kicked in his direction!). He’s clueless. That’s the body blow that follows the jabs to the jaw.

Boo hoo for Jerry? Absolutely not. I’ve tightened the belt because I always knew this day would come. I knew some day I’d be writing this post to this blog…the day I started putting this all down. It will get worse, before it gets better.

But no matter how you prepare yourself, it still hurts. Preparation just helps you pull yourself back up, and go to the next game or den meeting. It also helps you figure out what to tell parents, and which boy’s parents to talk to about Demetrius. Six-year-old boys can be a little mean, sure – but also some understanding and support from their parents can go a long way in helping Jr. better understand Demetrius.
At least today, on Friday, that’s my hope for tomorrow morning’s game. A bit more understanding.

If not? Well, Kim stepped up to be the team mom. No after game treats for the mean kids. ☺

Alvin’s still got it, 30+ years later….

Mommy is downstairs having a spa party. One of the rewards for this is getting to watch a movie trailer or two on Daddy’s computer up in our bedroom on ‘the big’ bed.

We watched the preview for the upcoming Alvin and The Chipmunks movie. At the end of it, Alvin eats a raisin, spits it out, and chews out Theodore. A little adult humor here that Maya needs explained to her.

Maya: Why is he yelling at his friend about the raisin?

Daddy: Maya, its not a raisin, it is a chipmunk poop on the couch.

Maya: He put it in his mouth so his friend wouldn’t get in trouble?

Daddy: Yes.

Wait for it…..wait for it……

There!

She laughed so hard that she was complaining about her tummy hurting. I have never seen anyone laugh that hard in my life. We watched it three times. Each time she laughed harder. By the time she got her composure back after the third one, she was in a little kid sweat fit.

As she went to bed she was saying to herself, “Chipmunk poop” and then would start to giggle.

Good to know potty humor is alive and well in the world, and in my daughter.

 

Apparently this door seems to be shut linking the two together, as reported in this story.  However, the way the FDA pulled it from shelves, I guess, fuel the speculation and lawsuits…..

Another subject of discussion for us yesterday with Dr. Amy was Demetrius playing soccer.

He says he likes it. With Demetrius being Demetrius, he isn’t giving us much to work with when we ask him the question: Do you like playing soccer?

His answer is yes, and it is a bit animated (in a kinda positive way). So from this we are assuming that he is in fact enjoying being out on the field with the other boys.

However, other behaviors are telling us something very different. After both his game last week and practice on Monday, he had complete meltdowns. Unable to regulate himself or calm down or handle the slightest issue (like how we choose to directionally drive home). Kim, having the magic powers of Mommy, was able to calm him down while we switched on the TV to watch some Avatar, but he was still really worked up and agitated physically/twitchy until about bed time.

Further, the boys are making fun of him, and he recognizes it. (He licked a ball laying on the ground, oral stimulation…this is going to get you teased, no doubt. The squawking doesn’t help either.) There are a couple that tease him quite regularly, and he tells them to not tease him. (Though, during practice, he scaled a fence and jumped into an ‘off-limits’ place…Kim had to coax him out….and he slithered under the fence to get out. I was impressed. The other boys were impressed. One of them even said, “that’s really high.” You can tell this earned D some boy points.)

Finally, even though he’s out there, he’s not really playing…and he can’t be expected to be on the field for long stretches, let alone the whole game like last Saturday, its just too much stimulation/stress for him (the parents cheering, the boys pushing…etc..) and when the boys all get tired, they start yelling at each other. Again, they are six-year-old boys. He needs to be playing short spurts of the game, at best.

That being said, Dr. Amy probed some more on his prior activities…he was in a hiking group, gymnastics, swimming…and agreed emphatically that it may just be better for Demetrius to do the practices, because the games may be just too much. And if he keeps breaking down after the practices and games…is the trade off worth it. Going forward, she suggested activities better suited for his condition: swimming, hiking…things he can handle and give him the aerobic exercise he needs. He’s classically autistic – this is just a bit too much.

On our drive back from the doctor office, we decided we are going to give it a few more practices and games before we make the call on whether D continues/stops. If he grasps the sport more, if he becomes braver, if he begins to settle in and not spaz so much during and after…we’ll play it by ear. But this we agree on: this is his last season. The other boys are already zooming past him in aggressiveness and the grasping and playing of the game. He needs me to be on the field with him constantly (literally right next to him) to get him to somewhat pay attention to what’s going on. Next season, coaches can’t be on the field. Game up for Demetrius unless something magical begins to happen in terms of his concentration and ability to grasp the sport.

To me, the only downside to all of this discussion/consideration is the social interaction. Naturally, the things that would be best for Demetrius are individualized – but very little interaction in hiking (unless we can find a group for him), same with swimming, rollerblading (oh Lord! Kim would go completely gray if he was doing this…), etc… and he needs, and wants, to be with other little boys. I worry about the scales here…too much on one side pushes him to the things he can easily handle (ex: hiking and more resource room in school – things where he better thrives, but there are less kids/children to interact with) against those that are just plain ‘real life’ (soccer, mainstream classroom, etc…) that he needs to learn how to handle. He wants to be with other kids, plain and simple. That is such a good thing, even if he’s the weird kid in how he acts out his stress when with them. He wants to be with them…truly, he needs this in his life. This is a conundrum. Which is better for him…short term, long term, and for everyone in his family’s mental health? (If he melts down all day – lets just say the overall stress level does go up….)

Maybe this one, as I said, takes care of itself because he probably can’t keep up with the other kids in another season – but theoretically we are beginning to run into that ‘what’s best for D’ question in social interaction all the time. He cannot handle a lot of group activity, and this is a concern.

One funny thing from the soccer game on Saturday. For those in the know, Demetrius was playing ‘right back’. Defense. This was strategic on my part, as the game with the wee-boys tends to stay in the middle of the field…so he wasn’t in the scrum (which he really doesn’t like) but he was on the field with the ball in his area periodically, somewhat taking part in the game. After the ball and gaggle of boys ‘came to him’ and then moved on, he grabbed my hand.

Demetrius: Daddy? Help me. The boys in green (other team) are being mean. They are running at me and pushing me.

Daddy: Demetrius. You have to kick the ball. If you stand next to the ball, then they will try to kick it. That’s the game you are playing with them.

Demetrius: I don’t like it. They kick the ball at me.

I did smile. I thought that was a cute little interchange.

What to do, what to do…..

Really ain’t a picture that can show what OCD is, but this is as a good a one as I’ve ever seen…. 

This morning I got back from my run with Buddy, and Demetrius and Maya were at the table at breakfast.  Maya eating her cereal, Demetrius his toast and jam.  Demetrius was bright eyed and bushy tailed, Maya – not so much.  

Demetrius: Daddy, Nonni and Grandpa are coming to the house in three weeks and will take us to a hotel and we will swim and watch movies and eat pizza at Chuck E. Cheese.  I found the DVD player (travel sized one) and want to watch Pooh Bear’s Christmas.

He is completely obsessed with this and I’m just not in the mood to hear it over and over again, which is, of course, what he did.

So there I was, irritated with this, ‘OCD-ing’ and finally got him to stop talking about it….under threat of his life.  He got on the bus and Kim and I got ready for his special needs pediatrician appointment.  We went over our game plan of what we wanted to talk about, and see what her thoughts were.

Three hours later the three of us (picked Demetrius up at school) were at Dr. Amy’s office talking about a change of meds (yup, we are going to try a pill…this should be a joy) and, well, his increased OCD.  With minimal prodding, off he went telling Dr. Amy about Nonni and Grandpa… and we discussed how if we turn down the street he didn’t want to turn down to go back home he whined, and on his bad days, it would lead to a full out fit with tears and the inability to calm himself down.   He can’t sometimes let these things go, like turning the wrong way.

Good news is that this treatable, but in discourse on the issue, Dr. Amy said something that thunderstruck me:

“Imagine that you are worried about your missing DVD player and you can’t concentrate at school, or at having fun, or doing anything else – imagine the stress that this must be causing Demetrius…he can’t really do anything but talk about it because it is so stressful and communication is so hard for him…making himself anxious and excited…. we need to get this under control so he can have a better and more calm life.  This is a manifestation of his condition, the good news is that this can be treated.”

At 6:30 am this morning he was fixated on a DVD player and what might happen in three weeks…and if he’s worried about it at 6:30 am, imagine the rest of the day?  

This is just one of those classical ‘just a part of the day’ moments when we simply just forget that he’s autistic, and just classify the kid as annoying at that moment.  I mean, in the back of my head I know this is a part of the condition that seems to be more prevalent (seems to be? No, it is…he worries more about the toy he didn’t pick at Target than the one he did and he becomes obsessed with it…not that he made the wrong choice, but that he made one choice over another) in his seventh year than any other before it.  I just simply didn’t think that it was causing him literally some internal pain and stress dealing with these issues…even though I have more than read that it literally can encompass his life and create high levels of stress he can’t really express outside the subject of that particular issue-of-the-day.  

Shoot, I’m a pretty ritualistic guy, and I know I get annoyed when things get out of whack, but it doesn’t really create chaos in my life.  This OCD for him can do that, and I was choosing to become annoyed about it.  My bad, shame on me for reacting to him (well, shame on me a little bit…I knew this would be a main subject of discussion at this meeting).  

So the point of telling you this little story?  Sometimes our autistic kids are just our ‘kids’.  They get on our nerves like any family member…regardless of their condition/disability.  IT JUST BECOMES PART of the daily fabric of OUR LIVES.  We sometimes forget to recognize that just getting through the daily grind is a bit different for them…. usually for worse.  So next time your child is overly ‘fit-ualistic’ about the missing DVD player, and can’t seem to move past it…. that ‘it’ might be something more for him or her… you might need to close those eyes, and count to ten, and then soothe them.

Not all of these will be solved with a little pill, like it probably will for Demetrius, but it will be better for him or her if you react without clenched firsts or jaws.  I just thought I share this epiphany of the day with all of you.  A slap of my hands was due.  

Super D had his first soccer game, an 8am-er! Here he is in his uniform, as Dad goes into Starbucks to get a green tea:

Unfortunately, I don’t have any photos of him playing, as I was on the field with him ‘helping out’. He was a bit ‘bewildered’ in his first game what was exactly going on, but we are quite hopeful that it gets better with practice.

Needless to say, after going to our brother’s game, Maya was juiced to get going to her’s, which wasn’t until 2:15pm (this may have been the longest day of Maya’s life waiting for this game to start..). However, that didn’t stop her from putting on her uniform as soon as possible:

Here are some picture’s from the pink bombshell’s game:

I would have always assumed, with Maya’s personality, that she would be a striker. But instead she is intent on keeping you from scoring on her goal. She’s a defender all the way. She is also really ‘kind of’ interested in kicking the ball….she’s more intent on blocking the ball (letting you kick it into her and then she kind of pushes it with her foot out of the way). Be interesting to see how this progresses as she picks up more of the game. Yesterday we went to play a bit and she was kicking it much harder to me as she is gaining some confidence that it won’t hurt to kick it.

This was funny, the coach had to stop and tell them that they were scoring on the wrong goal. I think we actually scored 3 goals for the competitors (we are the CHEETAH GIRLS), the Hurricanes. By this point Maya was chanting, “Cheetah Girls rule” continuously. Future cheerleader? Lord help us.

Once the game was over, Demetrius ran over and started putting the foldable chairs up. He wanted to go ‘get the ice cream now’, as he knew we’d be hitting the ice cream store once Maya’s game was over. Clearly, he’s in the zone in this quick photo.

Clearly worn out, and in need of some ice cream after this hard fought victory for the Cheetah Girls

The sharing of the post game victuals, Chocolate Fudge Brownie for Maya and Strawberry for Demetrius, and a bite of each other’s just to make sure it all tasted like it should.

Outside of the ice cream store, they were doing face painting. Soccer game. Ice cream. Face painting. The only thing that would have made this day better would have been if Emily had been with us, I was told. Wait….Maya’s team plays Emily’s next week. Maybe a post game donut together? Hmmmm……

After all of this, you have to come home and watch a bit of Nick Jr.

And finally…..

Kim and I have a picture from our wedding in our bedroom (the one I referenced D taking to bed with him a few posts ago) and Maya decided to interpret the photo into art. This is Daddy and Mommy getting married…..with Maya and Demetrius in Mommy’s belly. In the background is a piano player. Folks, let me be clear….Maya and Demetrius, or Maya or Demetrius, WERE/WAS NOT in Mommy’s belly when we got married. In fact, we were married 10 years before that became the case….but still, I loved this interpretation by her and it made me laugh.

 

I’ve gotten many an email and had many a conversation w/dads about how we’ll have to ‘do more’ so our kids can have the right therapies, etc…good for us! Still, the most important thing isn’t the dollars, it’s the time we spend. Good, practical piece on www.cnn.com this morning. Click here to read it.

 

 

I love running with Buddy. He’s a great partner, and no matter how much my ‘glass ankles’ hurt when I run, or if I’m having a harder one than usual, or whatever else the malady-of-the-moment is…he’s to my left, kinda smiling in that Golden Retriever way…and if I look at him, he always starts to wag his tail when we run.

I know he’s a dog and likes to just be outside, so when he sees a squirrel or a rabbit, his ears go up and he kinda starts to run in a prancing way, I even..in my most laborious way…attempt to speed up for him, so he gets a bit of fast gallop out of it. And I always think of him when I start running a race…that if he did better in the crowd, he’d run with me. I know he’s with me in spirit.

All that said about the damn dog….

So usually, at 4:30-5am-ish, we are the only ones out on the road…well, minus the rabbits and squirrels and newpaper delivery guys out to kill me….but during the fall, the high school cross country teams are sometimes out.

These kids run in a pack, they talk, they glide in fact, they run about a five minute mile (the slow ones do) and they all weigh about 12 lbs. They tend to pass me on my left or right…and while doing so scare the bejesus out of me (I have the headphones going…) and give me an ‘oh sorry, dude’…hoping they don’t have to give me CPR I’m sure.

This morning, it happens with a gaggle of girl runners…and Buddy tries to run with them at their pace. As soon as they start to pass, he tries to speed up…and then speed up some more….and some more….finally, I look at him, he looks at me….and I hear him whine. He is whining loud enough to be heard over my headphones.

He’s selling me out to go run with those girls.

Periodically through the run, he’d kinda think he saw them (no, dumb dog, that’s a lamp post way off in the distance) and whine and look at me.

No appreciation. I thought about not giving him a treat when we got home. Well, then, I thought - he’s smart, they’d coo him and maybe even pet his belly…that’s better than being sweat on by an overweight almost 40 year old, running haphazardly to your right… isn’t it?

He got two treats instead.

Talk to your local media about how you are getting screwed around with not getting your autistc kid proper education and whammo! Looky, looky…congrats to the New York Daily News helping to get this family’s story told and thus pushing for the ‘right’ outcome…

 

City officials find school for ‘lost’ autistic boy

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BY ERIN EINHORN
DAILY NEWS STAFF WRITER

Thursday, September 20th 2007, 4:00 AM

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It took just hours yesterday for Shaquan Vaughn’s luck to change.

The parents of 7-year-old Shaquan spent four years pleading with the city to find a school for their autistic son. While staying at home without an education, he never learned to speak.

Then the Daily News told his story yesterday, and by 11:30 a.m., city officials had faxed his file to the Association for Metroarea Autistic Children, a Manhattan private school that specializes in treating children with the neurological disorder.

By 4 p.m., Shaquan’s father was making plans for the Bronx family to visit the school on Monday. If the school is right for Shaquan, the state will pick up the tab.

“I’m speechless,” Shaquan’s father, Marcus Vaughn, said. “Oh my Lord, it’s going to be great big burden off my shoulders as soon as [Shaquan] can stop sitting around and waiting for something to happen.”

Vaughn and his wife had been trying to get services for their son since 2003, but the city had the wrong address for the family until 2006, then they were told that autistic schools were full.

Vaughn was angry yesterday that it took a News story for Shaquan to get help.

“Why couldn’t they do that all along?” he asked.

Vaughn’s lawyer Andrew Cuddy said he worries about other children whose stories haven’t come to light.

“This shows that they can respond when they want to,” he said.

The 236-student school that Shaquan may visit this week has nearly 80 available seats, said director Frederica Blausten, but that doesn’t mean the school will be the right fit for Shaquan.

“Every autistic child is very different,” she said. But even if her school is not right for Shaquan, she’ll help him find one that is. “One way or another, we’ll get him into something,” she said. “It would be improper not to.”

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If you want to give kudos to the reporter, she can be reached at eeinhorn@nydailynews.com. Here’s the original story she references

Periodically, Kim gets a ‘get out of the house’ card and plays it. Last night was one of those nights. Demetrius has decided that on nights Kim is gone, he is not going to sleep in his bed - rather, ours.

I tried to get him to go down in his room, and while I worked in bed for awhile, I hear him get up and come down the hall. He literally marches into our bedroom, and takes a picture of Kim and me off of the cabinet. He starts going back to his room with it.

Daddy: Where are you going with the wedding picture of Daddy and Mommy?

Demetrius: I’m lonely. I am going to sleep with this picture of Mommy because I miss her. I love her so much and miss her so much.

Daddy: Demetrius, leave the pictue in our room. Go get your stuff. You can sleep in our bed.

How can I say no to him after that drama?  Good stuff from my little autistic actor….