Thursday, January 31, 2008

Birthday Stuff & Eli Stone

Tomorrow is Demetrius’ birthday. I can’t believe he’s turning 8 years old. As I write every year on the kids birthdays, it seems just like yesterday I was holding them for the first time…..

Many of you wondered what I would be doing for Demetrius for his birthday surprise….as Maya woke up on her last birthday with 100 balloons with the number six on them on the floor of her room…not to worry, I’ll be posting pictures of Demetrius’ surprise for when he gets up in the morning. Let me just say it will work out great for him.

He also is having a few friends spend the night on Saturday after his party. The cutest is that his aide at school, Ms. Jones, has been invited to spend the night too. Of course, she felt it appropriate that she decline the offer, though she was honored to receive it from him…

Pictures to follow tomorrow….

Read here in the Boston Globe about how autism is involved with the premiere of tonight’s Eli Stone on ABC…all about shots and causing autism…hmmmm…fanning the flames? Not really, just dramatic license to make a story line more relevant…Law and Order has been doing this for years…

Posted by Jerry in 19:49:08 | Permalink | Comments (3)

Wednesday, January 30, 2008

The Sabertooth Tiger

A few years ago, when I started my latest job, I ‘bonded’ with a peer whose wife was pregnant with their first child. We were in New York, had a break between meetings, and started to talk. At the time, Demetrius was going through all his testing – we were pretty sure he was autistic at this time, but the allergy tests, etc…were all in the primary stages. As I said before, I remember this time of my life as being ‘constantly gray’ and as I type these words, that’s the mental image that is coming up in my mind…a gray day, sitting at a cafe in Grand Central Station, watching people, as I just kind of put it out there that while I’m in NYC, Kim is going through this testing with Demetrius by herself and I felt really bad about not being there.

This peer will remain nameless, but since I was sharing, he clearly felt comfortably sharing too – this unborn babe was down syndrome, and he was working through that with a few more months before the baby was born.

Needless to say, Peer and I not only got along professionally (we have lunch about once a month) but we also talk alot about what we are going through as dads, with the insurance, etc…. I’m probably more comfortable talking to him about Demetrius and my worries than anyone else I’m not related to. Sure, I write this blog – I’m a pretty open blogger. But most of you readers I wouldn’t know if you came up and kissed me, so there is a mental wall I guess here with me. With Peer, I could walk in his office, plop down in a chair and just open the book up. (We aren’t working together any more, but I’m having lunch with him tomorrow!)

As our two children have aged, he’s had two more neuro-typical kids to round out his family life. I think this guy is blessed to have a great family. But his first son has had a number of surgeries, and been on the brink a couple of times. I worry for him the same I worry for me and Kim…every time some scary situation comes up… probably takes a year off the back end of his
life. We try to discuss and deal with it. Peer therapy.

He mentioned to me once, and I’ll never forget it, his ‘sabertooth tiger’ scenario. We were talking about how hard it can be on us on days where work is stressful, then coming home can be more so (I’m glad these days seem to be less likely for me!) and running to pick kids up and go to therapies…he just wondered what it was like back in the pre-historic days where without modern medicine and care that the weak wouldn’t be able to outrun the sabertooth tiger, which is what we figuratively are trying to do today. We discussed the expectations of society with our children, and how hard they and we work, but on somedays…with all our tools, and therapies, and medicines, and gifted doctors…even today…. some of these special needs kids and families just can’t outrun that tiger.

Well, this morning, Kim was crying in the kitchen. Long and short of it, a sweet little girl who went through special needs pre-school and kindergarten with Demetrius had severe learning difficulties and spinal bifida in the worst of ways, recently passed away. Of course we lost touch with her and her family as we moved on with our life…and we found out from one of Demetrius’ therapists, who of course, was severly shaken up. She got a respiratory infection a day or two after Christmas and passed New Years Day. And apparently, in the ‘shake you up as a parent in the worst kind of way’, the parents had been elated Christmas Day….she finally understood all about Santa. So they probably had the best Christmas yet.

So I guess as I type these words I’m working through my feelings about this. I’m not really sad…I feel for the family, but somehow I’ve come to a place where I realize that we are going to come across so many special kids, that work so hard every day, but their little frail bodies just can’t outrun that tiger in the end. It is a part of this world we live in (special needs world) where we see these kids every day…and many neuro-typicals don’t. Kind of like war I guess, you know death is a part of it. But unless you are going through it, you only think you know about it.

I’m going to end this very depressing post with a positive. That being, if this was the first year this girl ‘got it’ in regards to Santa Claus, then the family has a very great memory to remember around the end of her life. They should be so lucky to have that moment together.

And while most autistic kids don’t teeter along the lines of life or death, many of the kids that share the waiting rooms with us at therapy centers and childrens hospitals do. So give your therapists a hug some day, because they work daily with kids that simply won’t outrun those sabertooth tigers. And that has to be extremely hard to deal with when the worst happens.

Posted by Jerry in 15:43:54 | Permalink | Comments (5)

Tuesday, January 29, 2008

It Has Been A Long Day…

Poor Demetrius, through the issues of adults, is having a bad day.   The pharmacy screwed up the prescription for his ADHD meds…and when we tried to get it fixed, they said it would take a few days.  So he’s having a hard time recalibrating himself all on his own. Lots of fits and howling. He’s had a friend over, and I think he is enjoying himself between his fits, but he is having a hard time of it.

It is always in moments like this I am reminded of how regulated and hard life can be for this boy if the moon and stars aren’t aligned properly.  It is a struggle for him.  Sure, tough on us (always lovely to be on a conference call and hear him ‘howling’ in the backyard at his sister and friend), but worse for him.

That said, the friend over is having a blast. Her name is Emily and she’s got the biggest darn smile on her face everyday.  When I come up to school, she’s usually holding his hand, walking with him, talking with him.  She took a shine to him early in the year, and the novelty hasn’t worn off. Nice to see.  Kim, of course, is taking a million pictures. I’m sure there is some deep psycho-analysis we could do here on why she is capturing all these moments, but she is.

Further, she seems to be unfazed by these fits he’s throwing.  That’s refreshing…but makes me wonder if this happens more than I know of at school? Hmmmmmm….

Questions for Kim later…..

Posted by Jerry in 22:14:56 | Permalink | Comments (3)

Monday, January 28, 2008

Bubble Wrap and Autism?

I gotta say, this is pretty inventive. Click here.
Posted by Jerry in 18:15:24 | Permalink | Comments (2)

Lunch with the kids today

I had lunch with the kids at school today….beforehand I stopped by at CVS and bought a Cadbury’s ‘caramel’ egg for Maya and a Reeces Peanut Butter cup for their dessert – needless to say, big hits at the lunch table.

One little girl, a bit jealous I suspect, stated that I ‘couldn’t bring in restaurant food’ to eat.  I mentioned that this wasn’t from a restaurant, and that kids brought candy in their lunch all the time – this isn’t a big deal.

“Oh,” she said… “But that sure looks good.”

I had a twinge of guilt that my Monday surprise for my kids made other kids wanting… but I think I probably would have been crossing the line if I had brought for everyone….

Posted by Jerry in 17:50:57 | Permalink | Comments (1) »

Sunday, January 27, 2008

A Few Things, One Of Which Was As Ugly As I’ve Seen

First, thanks to Maddie over at Whitterer On Autism for the Mwah! Award. She’s long been one of the best ‘autistic parent’ bloggers on the Web. Her turn of phrase is outstanding… and she doesn’t give herself nearly enough credit for her ability to blog. She’s great. If you haven’t read her stuff, you need to click here.

Second, she passed me this hyperlink about this special little boy right here in Georgia. Great little news story.

Third, I saw one of those fears I have about my special needs child realized yesterday.

I’ve blogged before about my fears of neuro-typicals who don’t understand what our/these kids, families, etc…are up against. Most, if not all we’ve met to date, have been understanding and accepting at certain levels. That said, as far as I know (or Kim and the teachers have told me) we’ve not just run across an aggressive or mean kid that bucks this lucky trend for us.

Yesterday, I took the kids to a new ‘high-end’ McDonalds that recently opened by us to eat and play in the play area (this is a really, really nice store, I tell you). The kids were eating, among many others, watching the TV with Cartoon Network on it, and playing in the play area. I wasn’t particularly paying attention to this one little girl, or boy (I’d say, 6-7 yr. olds). But I was once I heard the blood curtling scream, and saw the blood.

The boy was standing over the girl, he had a look of ‘I’m in trouble’ on his face. Here’s the quick and the dirty: apparently they were tussling over a Happy Meal toy. They didn’t know each other. So, he reached up, grabbed the implanted hearing aid on her ear/head, and pulled. Pulled her down the ground. And pulled it out.

Now, these things have to be built to have a release mechanism if situations such of this occur accidentally or on purpose. So I’m sure this happened. But she also landed on that part of her head. And she had open wounds in two areas…right around the implant, and she also cut her head higher.

Everyone reacted as you expect them to. The manager wouldn’t let the dad and boy at fault leave until the police showed up, everyone helping the girl, and a few moms giving the boy an absolute tounge lashing. His Dad just made a few calls and sat down…I’m sure completely embarrassed and petrified.

Paramedics show, the girl freaks out. She’s screaming because she has seen her hearing aid out of her head, and she’s seen a ton of blood. She’s asking her Mom, who is holding ice against her head (and her daughter as absolutely close to her as possible as only a Mom can do) and she’s asking if, “she’s going to die?”. Of course the Mom is literally screaming at her, “LOOK AT ME! NO YOU ARE NOT!” But it really didn’t do any good, the girl was scared to death, and of course, she couldn’t hear (apparently, there must be issues with her other ear, or the device was broken, etc…).

About five paramedics stitch up her head immediately (from the non implant cut, and by the way, kudos to the McDonalds folks, they closed off an area of the store just for this poor girl) and then cut the hair around the implant…because, as you can guess, they were taking her to the hospital for immediate surgery on it.

Maya was a bit freaked out (lots of kids asking questions ‘why’, ‘how come’, etc…) and we parents huddled around and tried to figure it out. (Dad showed up, collected the things, said thanks, and was off then to follow the Mom/girl to the hospital).

Demetrius, well, sadly…or luckily….being in his own bubble is at play here in this situation. He didn’t really care to pay attention – because Tom and Jerry was on the TV and he had chicken nuggets and french fries. So he just kind of looked over a couple of times, and went back to eating and watching TV.

The aggressive boy? Well dad and boy went off in a police car. Don’t know where, or what happened (I spoke to my dad briefly, his thought was that most likely they took them to just scare the boy and get him ‘booked’ for some counseling of some sort, I’m sure…not to mention in case lawsuits ensure, etc….makes sense to me).

So here is what we garnered from another Mom kind of watching when it all happened. The boy left his lunch toy on a particular table as he took his shoes off to go play. The girl picked it up. He wanted it back. She ignored him. He pulled her down from her chair by her hearing aide and took the toy. We all basically agreed – with all the background noise in an indoor play area, and her disability, she probably didn’t hear him ask for his toy back. Then child’s aggressive action ensued.

Needless to say, not one of you needs me to expound on what I fear might happen to Demetrius (or your child) in a similar situation. In fact, Demetrius, I fear, is in an even more tenuous situation because he doesn’t have any sort of implant, or brace…he just would be a kid ignoring another kid….no markers of any sort to say that something is ‘different’ about him. If this boy would do this to her without thinking it through, as is typical of children this age…. well, you know what I was thinking.

During this :15-:20 period, parents came and went (those not as close to the action as I was with some other parents & kids)…but they all got caught up on the trauma pretty quickly…but one Mom who came in and was listening to the story intently asked the obvious Mom question as how it would relate to her two kids in the play area: “There isn’t any blood in the climbing area or on the slide, is there?” We answered no, and she wanted to know where it had ‘been’…by the tables, not the play area, which had long been cleaned up by the McDonalds staff. Second follow up question by this Mom: “Did they use cleaner to wipe up the blood off the floor, or just water?” Because, you know, her kids would be running around without shoes.

Moms just think different than dads, no doubt. Am I wrong to want to tell her to take a ‘chill pill’ in this moment? Probably.

So, about :15 later we leave (I wanted the kids to play a bit after that) and of course, as luck has it, the new mini-van won’t start. Starter broke. Maya breaks out in tears, “Daddy, I’m scared! I want Mommy.” Mommy comes, gets the kids…and I go off with the AAA tow truck to the dealership to have the starter, and a few other things fixed (they are all under warranty, thank goodness).

I wonder if those hearing aides are too?

What a couple of hours.

And something that certainly makes me worry, just a bit, more about the boy and other special needs kids. As if I didn’t really worry enough about this kind of stuff now….to see it happen in front of you with another, only ‘wakes you up’ to these very ugly, but very real, potentail situations.

Posted by Jerry in 16:27:43 | Permalink | Comments (2)

Friday, January 25, 2008

If I Could Bottle It

Most of the time, when you see that statement in the title line, you think of kids energy and what every adult says when kids run around all day long, “If I could bottle that energy, I would be a millionaire in a minute!” (Or some variation of that statement).

While I completely agree, I would like to add as the parent of an autistic child that at times I wish I could bottle how these special kids minds work. 

On Wednesday Demetrius was eating breakfast and looks up and says to me, “Today my new comic books come in the mail.”  I mentioned that this could very well happen, because it is about time for them, but it might not be today.  He looks at me (I think amused that I would even argue with him on this) and says, “No today they will come.”

Sure enough, there, in the day’s mail – were both of his comic books.

Now, you and me and everyone reading this knows that autistic brains are wired differently, and none of us are surprised by what I wrote. Those that don’t live in our world or have never experienced such occurances with autistic kids would chalk this up to ‘coincedence’…..but we know better, don’t we?

Most of the autistic research is looking into causes of the condition, and there is a fair amount that is looking into how the autistic brain works. At this point, for me, this is what I want to know – and what I’d love to bottle.  There are so many times where the kid nails something to the wall, like correcting me about a Super Villian of Superman, or the exact day that his comic books come in the mail….mind you, he knows this without being able to give you the actual calendar date!

We all know an autistic kid that can recite for you every single Thomas and Friends engine, color and episode dialouge, or the stock price of GE for the past 15 years, etc…etc…

If I could bottle that recall ability, and apply it less random things….well, my gosh, I could remember where I put things like my glasses, or wallet….or where Maya put a certain toy….or Kim’s keys, etc…

Posted by Jerry in 20:02:02 | Permalink | Comments (5)

Thursday, January 24, 2008

Demetrius is ‘Art-istic’

Any of you that follow this blog know that Maya is a budding artist. It is what she loves best (next to her new American Girl doll, Marie) and it is what she spends most of her free time doing – drawing, coloring, painting, etc….

So yesterday she had a playmate over and the two girls were actually playing with Demetrius. He was doing pretty well from what I saw…but as always, he has to cut out a bit and go recalibrate himself, and his playing with the girls was laced with his TV Talk.

Friend: Why is Demetrius talking like that?

Maya: It’s TV talk.

Friend: What’s that?

Maya: Demetrius talks about TV shows.

Friend: To who?

Maya: To everyone.

Friend: Oh.

Maya: You know, it is because he’s ‘art-istm’.

Friend: He likes to draw?

Maya: No, he doesn’t draw like me, he scribble scrabbles outside the lines.

Friend: oh.

Maya: It is what makes him do TV talk. His art-ism does it.

Friend: oh.

First off, I think most of Maya’s friends have had a conversation with Kim or their mommies about Demetrius, so they kind of understand….or they are still just young enough to accept this is just what this kid does, no matter.  But I thought Maya’s mispronunciation was cute…and accurate. His TV talk is sometimes funny, appropo…and just some times ‘artistic’.

I’m seeing this through my daddy eyes, of course….

Posted by Jerry in 18:44:03 | Permalink | Comments (2)

Wednesday, January 23, 2008

Guys: Don’t Be Afraid To Laugh At Yourself

Even if you are leading the charge.  Did you guys see this?  What thinks you?

Posted by Jerry in 16:35:35 | Permalink | Comments (1) »

Tuesday, January 22, 2008

Atlanta Snow Photos

Saturday we received about 3 inches of snow.  Awesome!  And it was the thick, wet type – perfect for the wee ones to play in.  Here are some photos of the experience:

We built a snowman and snow mommy (Demetrius’ terms).  Super D, of course, provided the soundtrack (in TV talk terms) from the Frosty the Snowman cartoons.  Of course, as soon as it warmed up, they fell over.  Then, of course, Buddy went and ‘marked’ the snowman, so we had a nice yellow indention running down the snowman’s middle……

Beautiful look down the street as Kim and the kids sled down the front of a neighbor’s yard…..

Buddy wouldn’t come inside. He loved it. Of course, he loved best chasing the crazy, screaming kids and when I threw his ball and it got ‘lost’ in the snow (and he’d have to nuzzle around and find it…he really liked that)….

Picabo Street’s got nothin’ on Maya Marie in terms of sledding down a hill……

Demetrius rolled down the hill, old fashioned style…..

Demetrius had a blast going down on a garbage bag (he was just heavy enough to get it going fast)….

Not so much for Maya….not enough weight….but right after I snapped this Buddy took off down the hill and just rolled next to Maya, it was totally adorable…..

Posted by Jerry in 16:03:04 | Permalink | Comments (2)