Friday, March 30, 2007

A Sick Day Leads To A ‘Whoa’ Moment For Daddy

I feel so bad for my kids. They seem to have the worst luck in the world when it comes to getting sick. Demetrius has missed both his holiday and Valentines Day parties at school, and Maya’s got the crud and missed her Easter egg hunt. Is she upset? Yes, but Ms. Heike is going to bring her ‘eggs’ from the kids in class by the house today. That doesn’t make up for missing it, but it helps. Straight shots of sugary candy always help.

Sick and hopped up on chocolate. Maybe I should feel sorry for Jerry and Kim?

Spring break is next week, than another month-and-a-half of school and whammo – summer. Wasn’t Christmas break a few days ago? It got me thinking though that thought that all parents have – where did it all go?

Maya is a kindergartner next year.

A kindergartner.

Now, as much as Demetrius is Kim’s child – Maya is mine. As I have said numerous times about her, she lights me up. But when did she get big enough to be in the position to start kindergarten?

Wasn’t it last week I was tickling her when I was changing her diaper? Wasn’t it just a month ago I was cleaning up the high chair every time she ate…no matter what she was eating (My God that child was…what do I mean was…is…a messy eater)? Or she was crawling after her brother, pulling herself up on his ‘Thomas Table’ and knocking all the trains off (she would just sadistically watch him stand there and cry…devious).

Last month she was holding my finger, because her whole hand fit around it. Or when she’d look at me with that dirty face and put her hands up for me to lift her up…or how she just stared at me when she took her bottle (she would fall asleep with her Mom, but never stopped making eye contact with me).

Or when I would sit in the ‘big leather chair’ reading or watching TV, and you would just sleep on my ‘rump’ (I have a smaller one of those now – partly due to chasing after you and your brother).

Kindergarten. I’m getting nostalgic and I know you can’t wait to ride the bus to school and be with ‘big kids’.

This is how it is supposed to be, eh?

I don’t like it. Not one bit. I know in a week you’ll be going to a dance with a boy, filling out college admissions and asking me to walk you down the aisle.

Kindergarten.

Yes, it is good to know who owns who in this world…. 

Posted by Jerry in 20:40:47 | Permalink | Comments (10)

Thursday, March 29, 2007

YOU

Periodically ‘ya’ll’ comment/post on how bad it is, or how junior isn’t making progress. I’ve been more than enthused that many of the readers have jumped in to help by providing some uplifting comments and thoughts.

Makes me feel that writing this blog is worthwhile – for all of us.

I also visit a number of blogs – focus on each is different, but for the most part they are written by moms or dads dealing with autism and the ‘collateral damage’ that comes with the child (or in some cases, in the plural!).

My gosh, I’m often impressed with the efforts many of you make to best integrate and/or educate your children with the world around them. I sit in an office for 8-10 hours a day, but most of you do all of these things AND BLOG! I’d be wiped out. I just blog about it – ya’ll are doing it and blogging about it. Impressive.

That said, one thing seems to be consistently missing from the conversation, me thinks – what are you guys doing for ‘you’?

I’m a chubby guy, but I’ve always been active… and I get up before the crack of dawn, so I go to the gym and am at the doors when they unlock them. When Demetrius was first diagnosed I pounded the weights pretty hard. It really didn’t do anything for me in terms of dealing with the pain/anger/disappointment/mild depression. In fact, looking back, I’m not too sure it didn’t make me angrier.

Then we got Buddy, I started taking him for long runs and I found that I could ran harder, faster, longer when I was worked up about the boy. I also started shedding weight. I felt better physically and mentally. I was then running and it wasn’t about him…it had become ‘about me’.

All this kind of ‘well-being’ mumbo-jumbo is well documented. But honestly, it is working for me. I’m running 10-Ks and find I’m just in a better place to deal with the autism, the stress, and the other responsibilities in life beyond the boy.

I’m at that place in life where this is the best I can do, so I embrace this time. It’s me, the dog, my headphones and the road. I can think about things. I can not think if I want to. I can daydream. I can imagine what it would be like watching Demetrius play soccer as a regular kid, with me being a regular dad (well, the second part of that is debatable)…or I can try to sort out my ‘facts’ from ‘feelings’ approaching an IEP or pediatric appointment.

I’m not running to race, nor am I running away from anything – I just feel better about me, my life, and where it is all going.

Truthfully, my boss was prodding me to start a blog, but it was after a long run on Friday morning last April that I decided I needed to do it. I’m here, you are reading this, because I started running. I’m glad we’ve met!

My wife, Kim, has her art. She’s an amazing artist, I only wish she would just head down into her studio (aka, extra room in the basement) more often and just get lost in painting or printing.

Outside of the cyber world, I know many of our ‘autism’ families here in Atlanta could do to get out more and find something that is ‘theirs’ that would take their mind off of their worries/concerns.

I hope many of you are doing so also, but I also get posting about being tired, or at the end of your ropes – and many of these postings come through at 3am, or so…

All I’m saying is that whether it is heading on a Sunday to Starbucks to buy a book and a latte or get out in the backyard and garden some…whatever it is….make some time to do something you love, or at least like. Find your time, and then find your switch. Try to turn it off. Or turn the glare down if you can’t turn it off.

Make time for you. Because then the time you give your child will be more positive and powerful.

I could definitely do a PBS special, don’tcha think?

Posted by Jerry in 15:16:00 | Permalink | Comments (4)

Per Mcewen…..

Go here for the Autism For Dummies book info.

 

Posted by Jerry in 14:16:10 | Permalink | Comments (1) »

Wednesday, March 28, 2007

Two Craft Sticks – That’s All Daddy Gets!

Demetrius became worried the other night, as he tried to sneak a DVD up to the computer to watch (when he said he was going to play his Earobics game on the computer – yea right), he didn’t find the ‘blue case’ with all the DVDs in the last place he hid it.

Demetrius: Daddy, I can’t find the blue DVD case. It is missing!

Daddy: No Demetrius, you were sneaking movies again on the computer, I hid it so you can’t find it.

Demetrius: Where did you hide it? (I have not yet decided whether he asks this question because the concept of hiding and not telling him where it is…is beyond him {there is a term for this that I can’t seem to remember at the moment} or he thinks that I will actually tell him because of his powers of persuasion).

Daddy: Demetrius, I’m not telling you where I hid it. You aren’t supposed to watch movies on the computer.

Fit begins HERE.

Fast forward few days, he’s been good. I see it hidden on the shelf on top of a blue Adidas shoebox. He’s been good and I’m considering giving it back to him.

Last night I was reading to him in bed and he begins to negotiate with me and I’m coy, as I haven’t let him in on the fact that I may give it back to him soon.

He grabs my chin to get my attention (he’s not interested in the Peter Rabbit story I’m making him sit through anyway) and moves me chin to chin with him (Daddy’s got the whiskers, that feels good to him). He gets his stimulus and we touch foreheads and…begin to negotiate.

Demetrius: Daddy, let me talk to you.

Daddy: Sure, what do you want to talk about? (Blue DVD case maybe?)

Demetrius: If you give me the blue DVD case back, I will give you two craft sticks and we can be friends.

Craft sticks are what he gets in class if he’s good, etc…and at the end of the week, if you collect enough, you get a gift from the treasure chest. If you are bad (like wrestling in class, etc…) you get craft sticks taken away from you.

Daddy: How many does it take to get something from the treasure box?

Demetrius: You get two for the blue DVD box, Daddy. Ten. (I think that’s how many he is telling me you need for a treasure, but he is very intent on only giving me two.)

Daddy: I want a treasure. How many do I need for a treasure?

Demetrius: Daddy, you get two craft sticks. Mommy gets the rest, okay.

Now, I have the blue DVD case. Kim doesn’t even know where it is at! I have his movies in my control. And if I’m doing the math right here, he’s negotiating with me for it, but he is giving me significantly less than Mommy, who isn’t even a part of the equation. I’m perplexed.

Daddy: How come Mommy gets the rest? I have the blue DVD box, not Mommy.

Demetrius: Because I love her.

Huh?

Daddy: Demetrius, I have the blue DVD box. I want more craft sticks! (And you just want to be friends with me…while you love Mommy!)

Demetrius: Daddy. Listen to me, I want to talk to you. If you give me the blue DVD box I will give you two craft sticks and we can be friends.

I know where I rank. I have his precious movies, but we’re going to be friends at best. If I negotiate on his terms, I give him them back; he gives me two craft sticks. The remaining eight (I think) go to Kim, because he loves her. A win-win for all of us, right?

Exactly. I know when I’m beaten.

He goes to bed. I find the conversation cute and decide to give the DVDs back to him the next morning before I head off to work. I walk by Maya’s room. Kim and Buddy are in there asleep on the bed with the Pink Bombshell.

Daddy: Buddy, lets go downstairs, come on boy.

Buddy raises his head. Gives me that ‘dumb-as-a-bag-of-hammers’ golden retriever look. And puts his head back down…right by Kim’s leg. He doesn’t move.

The lesson: this emperor, Jerry….he has no clothes . His power is only in his head…or he’d get more craft sticks. Wink

Posted by Jerry in 18:58:11 | Permalink | Comments (3)

Tuesday, March 27, 2007

They See More Than You Think They Do…..

Read about it here.
Posted by Jerry in 21:25:18 | Permalink | Comments Off

Heat Rashes And Some Observations

Follow up to the ‘Wilting Flower’ post yesterday: Demetrius has two big rashes on the back of legs – heat rashes. Enough said.

I’m going to try a new angle to my postings here: some observations. Not Deep Thoughts, like Saturday Night Live used to have with Jack Handy, but more of the Jerry Grasso type…which I think, fits in no box at this point.

• Adult friends that really try to understand the world we live in ask Demetrius to ‘look at my eyes’ or ‘look at me’ when they talk to him, or he is talking to them
• Before you had kids you thought tired was working late at the office on consecutive nights or pulling an ‘all nighter’ – post-children, that’s called relaxation
• Certain acronyms bring on bad moods, getting mad and/or extreme agitation. Ex: IRS or PMS. Those pale in comparison to this acronym – IEP
• The Internet and all its 2.0 social networks have enabled me to get to know folks from Australia to San Jose, CA to Columbus, OH to Vestal, NY…I know these folks kids, their issues, and their personal pain. For the life of me, I don’t know the name of the couple that owns the house across the street
• ‘35’ is the watershed year. I have two friends with cancer and one dropped dead on a run in Seattle over the past year. These things never happened to ‘us’ before I was 35. Kids change you, your parents decline change you…But personal ‘the clock is actually ticking’ changes to you and your generation – begin at 35
• My inner grumpiness is not so inner anymore
• As you get older, your tolerance to risk and change go up, but it seems your want for it goes down
• When we had the Soviets – you were with them or us. I don’t know who is with whom, or who is against whom, anymore. It seems even within certain countries and cultures, this is unclear
• People who talk too much don’t say anything. People who don’t say anything really don’t have much to add to the collective. People who look you in the eye and say what they mean should say more. This is why I love Hemingway’s writing
• This is why I’m the luckiest guy in the world to have my father and Jim Brabec as my father-in-law. I have two men that can keep me grounded with straight talk and solid advice
• On top of that…the two have zippo in common outside this marriage and the offspring produced from it
• Oh, they also have golf
• And bad lower backs
• Does lower back pain bring on straight talking?
• Golf, on certain days, can lead to bad moods, like IEPs, I have witnessed this from both these two men
• Both married blondes
• So did I
• Does this mean I’ll be a straight talker eventually?
• In life we want it all. I don’t think we hate Alex Rodriguez for getting it, or the guy who took the last three slices of sausage/mushroom/onion pizza at the buffet either. We hate them because they had the chutzpah to go for it, ask for it, or just take it and they got it. Most of us don’t have that chutzpah – for the millions or the pizza, so really our self loathing and/or inadequacies are transferred to them at the moment of realization that they ‘got it’ and we are stuck eating just a couple of plain old cheese slices

• We’ve taught our kids to feed themselves, bathe themselves, write and speak as grammatically correct English as possible – but wiping their bottoms on a consistent basis is just wishful thinking
• And when is the tipping point where the wiping of the bum becomes automatic?
• I often question myself on this sentence: Would I rather be smart and critical or dumb and happy? In today’s world, it seems more either/or than I want to acknowledge
• I’m not sure I know anyone that can answer that question themselves
• Why do we conceptually see heaven as white and hell as red? I look better in blues and tans, whether strumming a harp or moving rubble across a burning lake
• Desert khaki, I think, is my favorite color
• Even so, I still dislike the English Patient – it is like a movie created from a Banana Republic ad
• I don’t want to even think about then, what the J Crew movie might be
• I have to go back to work now. You are lucky if you say instead, ‘I want to go back to work now.’ That one word speaks volumes

Posted by Jerry in 16:14:22 | Permalink | Comments (5)

Monday, March 26, 2007

Demetrius: Wilting Flower…

Demetrius and this rose had alot in common yesterday

Saturday was 85 degrees and yesterday was warmer, reaching the mid-nineties in the heat of the day. It felt it yesterday. We’ve had a gigantic swing in temperatures over the past week, going from 53 a week ago Sunday to the 90s (new record high).

What happened I should have expected, but it had never manifested itself in such a way before.

These autistic kids, almost unanimously, have sensory issues. Some (most) of these autistic kids can’t handle loud noises, or certain fabrics on their skin, etc…the list is as varied as it is endless. Never would I have thought, though I should have, that being out and about in severe swings in temperature would have the same net effect – but they did on poor Demetrius.

We went to a baseball field to throw the ball and play with our dear friend Joseph..in fact, at one time or another all of the kids were out tossing the balls back or forth or taking batting practice. At one point I was tossing the ball to Demetrius in the outfield.

Demetrius: Daddy, I’m really hot.

Daddy: We’ll leave in a few minutes, lets play a bit longer.

Demetrius: My body hurts. I’m hot.

Upon that note, we got some lemonade from Ms. Elaine, gathered up Maya, and headed to the car. Upon firing up the air conditioning as high as I could, I pulled into a Dairy Queen, got two chocolate dipped cones and a big bottle of water. He downed both.

He was just weird, and moody, the rest of the day. We went to get Mommy’s birthday present and he laid in the middle of the floor of the store…the air ducts were on the ground and I think he was soaking as much in as possible. He was really lethargic, and everything was a battle and pitched fit. To the point where he’d start having a tantrum… and he wasn’t articulating why he was ‘pitchin’ the fit’.

About 7:30pm he was crying and grabbed Kim and just said, “I’m tired.”

A shower and a couple of stories later, I asked him how he felt. He told me he was ‘not hot’.

He basically passed out after that.

It took me thinking about it the rest of the night to put 2:2 together that it may just have been sensory overload yesterday. He actually prefers the warm weather over the cold (unless there is snow), but too sudden a change is tough for all of us (and the pollen! As I said Saturday, both are killers – heat and pollen!), let alone him.

Oh well, he did like it when we lived in Southern California….

Hey kid, who didn’t like 75 degrees and an ocean breeze!

Posted by Jerry in 17:12:21 | Permalink | Comments (3)

Sunday, March 25, 2007

Saturday Stuff

Wow – last Saturday it was really, really cold. I mean, we couldn’t stay out too long…because when we went to get our baseball uniform it was about 30 degrees out with wind.  Today it was 85 degrees outside.  Plus, we’ve got the Atlanta pollen count going straight up right now….

But that doesn’t mean we don’t get out there anyway!

Here’s some Saturday pictures for you….

In Atlanta, if you don’t stop and look at the Dogwoods when the bloom… you just don’t appreciate Mother Nature’s true beauty…

Demetrius and Jonathan running to Third Base.  Jonathan seems to have grown 2 inches since the fall season….Demetrius was so excited to see him. He didn’t know what to say..but gave him a huge hug

While Demetrius was playing the game, Maya was making friends…she would have done anything to get this go kart started

At lunch we colored, we drank lemonade, played with our new My Little Pony and discussed the upcoming birthday party this afternoon (she did not spill blue paint his week, so she made it….)

We went to the local Wal Mart and got our picture taken with Spidey!  Now, believe this or not..there was a huge stand with Spider Man toys right there!  So we got a new Spider Man…and Maya got that new Pony in the picture above….

Maya’s other flowers are also coming up…look at these beautiful purple….I don’t remember….flowers….but she is so proud they are coming up…

And her tulips are just plain beautiful!

 

 

Posted by Jerry in 02:47:55 | Permalink | Comments (2)

Friday, March 23, 2007

Not Always Wine And Roses…..

I think we all communicate a lot of ways with each other. This blog is a ‘one-to-many’ method…I read a lot of your blogs, meet folks through autism support functions, or we just bounce into each other at the parks, etc…

I got an email from a person re: my ‘incredible’ posting that figured out how to reach me outside of the blog.  It reminds me of the old saying ‘don’t let the lows get you too down and the highs too high’. 

I also got a couple of pings about being ‘lucky’ because Demetrius is doing well and that these folks wee-ones, seem to be (using my words here) ‘treading water’ or ‘receding’ at this time.  They are looking for a pick-me-up, I think.

Look, at the same time Demetrius’ doctor said that, we had to have a discussion about issues he’s having at school, and I’ve posted about Kim observing the classroom, etc… so while I’m more than thrilled to get such a statement about his progress, it’s not all blue skies right now – he’s got real issues in the classroom at school.  

We all know this too well – it’s always something, or a bunch of somethings. With all of us, in all of our regular or special needs lives.

All kids, and I’m only into this 7 + years now (my qualifier), and was once a child myself, move forward a few steps, take a few back. I still do as an adult! It just seems, well, so much more stark with these special needs kids.  And let me tell you, having a son on the spectrum that is not ‘severe’…but not Aspergers either…somewhere close to mainstream…can be frustrating too.  I write a lot about what he can and can’t do…and how sometimes we, his parents, start to treat him like a neuro-typical kid, then he has a breakdown or set-back of a sort, and we are reminded not to make such assumptions and treat him in such a way.

But yes, he’s making progress, and he doesn’t have many non-verbal days any more or just stare blankly out a window, but we still have good days — and bad days. 

I only say that if your child has stopped making progress – I’m so sorry for any day that he or she isn’t. It is hard enough on all of us with therapies and school issues and worries about the future…and then when their complications  – how do I want to say here – complicate a bit more, maybe – that it can all seem hopeless at times.

But you aren’t alone. Support groups are out there. Great blogs are out there. Start your own blog, maybe?  Autism Today, Autism Speaks….heck, I might have issues with Suzanne Wright’s speaking but not with what she’s doing.  She believes she can help each of us…maybe see if her organization can help you and your child. 

Hang in there.  Maybe tomorrow will be a better today. Maybe better begins in two weeks.  Maybe it will be a rough few months. But hang in there.  And look for and enjoy the little things.  Find the spots where the two of you can bond.  Even when Demetrius has bad days, he still wants me to read to him…and he still puts his temple or forehead against mine (most of the time).  It’s a Daddy/Demetrius love thing. Even after he’s had a meltdown.

Good Luck!

Posted by Jerry in 15:33:57 | Permalink | Comments (7)

The Whole MTV Episode Is Up

You can find it here.  Looks to be a tear jerker. Don’t watch at work, methinks…..

  

Posted by Jerry in 13:00:59 | Permalink | Comments (2)