Tuesday, September 30, 2008

Bummers


In my yard, and I became Carl…

Yesterday seemed to be a continual bummer of a day.  Maya didn’t feel well (though we did go get sandwiches at Subway and eat lunch together, which I always love, just the two of us. I rarely get alone time with her like that) and then got bored as only a kid can when her parents are working and she’s played with her boring toys, drawn till her fingers hurt, and watched way too much TV.  She was even ready for Demetrius to come home!

Oh, and she developed some weird sort of heat rash that was spotty throughout the day, and then all over her body when she went to bed.  We think it is from the weather changes we’ve had (70 degree days followed by 85 degree days and some ‘mommy soap’ she used in the shower)….

Demetrius had a bit of a bad day, an autistic day, if you will – a lot of time wanting to do TV talk, stay in his bubble…but that often happens on days where he has school and therapy…and probably double that for the fact that he has therapy on Mondays now.

I was also bummed when we tried to load his new video game on the computer, and it kept crashing.  The kids have a PC that is loaded with nothing but games and educational programs…isn’t connected to the Internet, this is all it is for…and this particular type of game (Lego computer game) just crashes each time we try to load one on.  No idea.  So I promised him that I would take it back and get him another one. This appeased him.

Finally, last weekend I spent an inordinate amount of time in the yard working on dead spots from the drought….only to come out and see that a mole was tearing up the yard.  In fact, at one point, as I was standing there pushing down his ‘tunnels’, I see a tunnel pop up across the yard.  Hello Caddyshack.  I am a big believer in nature living in my yard (remember that snake photo from June? Well, I am letting it live in our yard), but now I’ve got these tunnels all over and also he’s tearing up the grass.  I think some mole ‘peanuts’ will have to be put down.  I hate to do it, but I also don’t want a yard torn up from the bottom up either (and he’s gonna eat all of our bulbs, and rip up root systems of my baby trees).

Kim was laughing at me though, I was out there like Carl in Caddyshack looking at those tunnels last night…

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Monday, September 29, 2008

Home Sick

We had scheduled a couple of parent/teacher meetings today (I told you last week re: Demetrius meeting), and planned another for Maya, since I tend to work from home on Mondays.  Of course, last night Maya’s warm, doesn’t feel good and is restless sleeping…so Kim is attending Demetrius’ meeting while I nursemaid Maya.  She’s a bit better (we’ll see how she is as the day progresses).  Right now she’s eating breakfast, watching Animal Planet, and chatting my ear off about the show on cats.  She loves cats, she wants a cat badly, and her want of cats is quite high because we don’t like cats – so she knows she’s not going to get one.  We’re big dog people. 

Earlier this morning Demetrius wanted to wear a ‘nice shirt’ for his presentation at school, and wanted to wear a tie.  Since it is going to be in the mid-eighties today, we talked him out of the tie, but he still wanted the dress up shirt.  He’s stoked.  We practiced his presentation before we to the bus stop:

  • Texas is the Lone Star State, not the long arm state
  • Bluebonnets are the state flower, not blue bags
  • He got mockingbirds right (state bird)
  • And the state gets its money from oil and long bulls (longhorns)
Demetrius then opens up his ‘Texas box’ and shows a picture of the state, a book that includes facts on Texas and takes a bow.  He likes taking a bow and gives himself a ‘ta-da’ when he’s finished.

I hope he does well, he’s quite proud of himself and  he should be. 

Will be an interesting day, as Maya is sure to get bored and seek us out to chat.  I only have a few calls today, so it shouldn’t be too bad… (famous last words)

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Saturday, September 27, 2008

Demetrius’ State of Texas Project

Posted by Jerry in 15:51:48 | Permalink | Comments (4)

Go Give Someone You Love A Hug

Sometimes people pass through your life, professionally — and that’s really as well as you get to know them.  Carol was one of those people you wished you got know a bit better. Once, when I was at a prior employer’s Pasadena office, she drove out to get me and take me out to lunch and drive me back into LA for a set of meetings. She was sweet, and had just the best laugh – big smile.  She supported (in a PR role) the company I was working at from about 2004-2006.   We changed agencies (where she worked) and the staff all agreed that she would be the person we would miss most.

I keep in touch with another woman from that agency, and when she let me know Carol was, sick, very sick, I let everyone who worked with Carol know.  All I kept remembering was that great laugh

Hug your kid. Because you just don’t know what tomorrow brings.

From today’s LA Times Obits:

Carol Von Sprecken          
Von SPRECKEN, Carol (36), was born in Los Angeles, CA on December 1, 1971. She passed away after a long battle with breast cancer with her husband by her side on September 22, 2008. She will always be remembered for her never ending smile, faith in others, practical wisdom, strength and joy for life. Carol was a proud UCLA graduate, and her excellence in writing allowed her to enjoy a successful professional life. Although she had many accomplishments in life (such as, becoming a beautiful and talented dancer) Carol was a person less concerned with what she did and what she was about than with whom she shared her time; Carol’s great legacies are the relationships she developed and cherished as a wife, daughter, granddaughter, sister, niece, aunt, cousin, friend, but especially as a mother to her son, Brady. Carol had reached a place of complete happiness in her life and even though faced with death she was often heard saying, “If I had to do it all over again, I wouldn’t change places with anyone.” She lived her life without regret and made clear that the life she had was worth the price she ultimately paid. Carol is survived by her husband, Brad; her son, Brady; her parents, Linda Ades Rozio and Leon Azicri Rozio; two brothers, Zacky Philip Rozio and Leon Jose Rozio; along with cousins, nephews, nieces, aunt, uncle, and dear friends who were all held very close to her heart. Services will be held on Friday, September 26th starting at 11:00 a.m. in the SkyRose Chapel at Rose Hills Memorial Park in Whittier, CA.

Posted by Jerry in 02:02:55 | Permalink | Comments Off

Friday, September 26, 2008

The Things You Say….And Things People Think When You Say It

So, it is Friday afternoon and Kim and I are talking about our plans on a Friday night.  Friday night, we are going out and we need quarters and one dollar bills.

Wait…..

You thought I was talking about alcohol and that, didn’t you?

Shame on you!

I was talking about quarters and dollar bills so the kids can play video games at the pizza restaurant. 

Shame, Shame, Shame….

Kim and I both giggled when I said this and we realized what it sounded like…..

Posted by Jerry in 20:21:14 | Permalink | Comments (2)

Thursday, September 25, 2008

No Pit At The Bottom Of My Stomach

You need to give props to people you think do a really good job. 

Over the years with Super D we’ve had good therapists and not so good therapists. We’ve had the same with friends (kids and parents), and teachers.
With certain kids and parents, you move out of bad relationships, and with therapists you transfer to a different one at the center or switch centers.  I think everyone who has a special needs kid at a public elementary school would agree that it is typically a bit harder in this system to move in and out of situations.

Right or wrong, it seems to me that the school system has a hard time working with individuals, because it is geared to work with groups.  And sometimes, say, with other special needs kids, their disabilities are somewhat easier to deal with.  Ultimately, there are difference in blind children and deaf children individually, but in the end they can’t see or hear.  This might be a bit of a simplistic view, but in terms of the school system, I think this is my view of how they boil things down.

Autistic kids are anything but, and there aren’t two anything alike. Each one bucks just about any stereotype. 

So when you have trouble with a school or the system, you have to take the long view (I’ve written on this numerous times). Kim and I made some mistakes early on and learned how to communicate and deal with the reality of the situation as we have started this journey, but realistically, we’ve had some bad times with it.

When Demetrius transferred from Lake Winward back to Abbotts Hill, we brought baggage with us (I’m sure our reputation preceded us), and we gritted our teeth.  All of that said, I realized another two pieces to dealing with the system – the personality of the teachers and the administrators make all the difference.  And what a difference it has been with Abbotts Hill.

I’m going to keep these teachers and administrators nameless because they haven’t agreed to be blogged about.  I feel I owe them that, but I don’t mind telling any of you that the school and the people you deal with there make it as positive an experience as it can be.  At least in our case.

As I blogged about on Tuesday, we had some requests of the teachers for Demetrius as he’s having a hard time in school right now.  When I send an email with all of these bullet points, I have this pit in my stomach that I’m about to go through a frustrating and potentially painful experience – this is what it was previously. 

Instead, what I get back as an email response is positive and helpful.  The key people want to work on things to try make Super D’s day better so he can get the most out of school.  And they want us to provide our thoughts and feedback, and provide solutions to those. And they want to meet – not in six weeks, but could we be over to the school within the week to talk about this?

Really, what more do we want to hear?

Realistically, not every thing we ask for or wish could be done, can be done to accommodate his needs.  We recognize that all this noise, and the way his day has to go, just isn’t 100% best for him and his condition – but we passionately believe in the social environment of mainstream classrooms and that this boy wants to be with other kids his age.  He may not be able to experience all the things ‘in the right way’ but he is experiencing them – and when you have teachers and administrators that recognize this – things can be negotiated in a better environment for everyone involved.

While things aren’t going as well as they could be, and Kim and I are worried, it is good to know that the people that help this special little boy care also, and want the best for him.  

It makes this one thing easier – and that’s sleeping. I just don’t find myself staring at the ceiling fan at 11:30pm wondering how I’m going to manage a toxic IEP meeting along with finding a solution that is good for him.  

Instead, I stare at the ceiling fan worried about when I have to pay up, and what that will look like, for the spoiled baby boomer generation that wanted it all, all the time, for the past 30 years, and is willing to mortgage my future with a $700 billion dollar bailout so they don’t retire in a recession.

Funny, I thought recessions were just a part of the capitalistic cycle? Wait – not if it takes money out of baby boomers pockets.  The ‘me’ generation wants to make sure it will still be about them in their twilight…wait, I’m sorry, I think this is better suited for another blog…..

Posted by Jerry in 19:19:57 | Permalink | Comments (6)

Interesting Piece On Parents Lobbying In Canada

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Tuesday, September 23, 2008

Great Piece On Fragile X On NPR Today

Take a listen or read, here.
Posted by Jerry in 18:25:57 | Permalink | Comments (1) »

The Dr. Amy Visit

We had our meeting with Dr. Amy yesterday at the Marcus Autism Center (changed the institute’s name).  We discussed the fits, and anxiety, and irritability, and stubborn streak.  In fact, Dr. Amy got to witness this first hand, as Demetrius pestered her endlessly about her giving to him a robot toy on her desk (by my count, he asked her for it, in the length of an hour meeting, 12 times).  She did note that he really was trying to sweet talk her by smiling and changing the tone of his voice from ‘Pleaasseeee’ to a much ‘sweeter’ request.

First of all, we see that Demetrius has grown two more inches and gained a few lbs. – so we needed to up his prescription of Vyvanse.  With this, we should be able to see him making some better decisions in controlling his impulses and controlling his fit-throwing.

We are also implementing the rewards program again.  To get him to behave, he’ll get his rewards again. If he doesn’t, no stickers, small toys, etc…Do your homework without whining, you get to have ice cream for dessert, or a special treat on the way to your nature walk, etc…this feels like a step backwards. But really, this is a Jerry problem, not a Demetrius problem. It is only that we did this when he was 3, 4 or 5 – but if it helps him become successful in controlling himself and getting back on track – then it will be worth it.

We talked about his safety, the roof, falling through the basement ceiling and Dr. Amy called it: Demetrius is intelligent (changing the tone of his voice to get the robot off of her desk), but he has very little judgment at this point of his life. You can tell him 50 times not to do it, he’s going to do it when he gets the itch.

It is in this conversation that we kind of switched from Demetrius to the rest of the family.  Dr. Amy noted that because of this, we have to watch him closely, the same at 8 years old…that we did when Maya was 3 years old. But he’s bigger, faster, and more a danger to himself (see roof) than a three year old.

We discussed the fact that this has to be amazingly tiring.  If we don’t go outside with him when he’s out playing, he’s likely to end up three blocks away.  If we build him a fence, he’ll figure out a way over, under, or around it.  Kim has to be on, all the time, until he’s asleep.  Jerry’s on all the time.  A fence doesn’t solve the problem…because this problem can’t be solved.

So what to do? We are going to explore options to get some help for Mom and Dad, so we don’t go crazy (she’s the first professional that’s ever just said it is wearing on us).  She also mentioned that parents she’s had with other children who ‘bloom’ like Demetrius in their autistic tendencies often have to, need to, live around their families.  And as you know, we have considered over and over moving closer to family, so that’s probably back on the table when the economy turns or an interesting job pops up.

I did bring up the fact that he is an eight-year-old boy, and many boys this age do stupid things like jump on the roof…she heard me out, and immediately told me no, he’s not like other boys. He just doesn’t have the ability to judge and doesn’t have the internal buttons, fear of the activity, fear of getting in trouble, etc…to stop him from doing something like this. He’s not like those boys who are exhibiting bad judgment.  Demetrius lacks the ability to do this.  Unfortunately, I have to agree. For the fact that he got in enormous trouble for going out on the roof, and we nailed it down, and ½ hour later he was trying to open it and go out on the roof again….sigh.

We are going to get Maya into some sibling sessions over at the Emory Autism Center.  She needs to talk to someone she’s not related to about her brother, and talk to other ‘regular’ boys and girls going through the same thing she is going through.

Lastly, it was suggested that Kim and Jerry take a few family therapy sessions.  We can find a therapist that ‘handles’ parents who have highly stressful lives with special needs children.  Of course, this is probably last on our list.  Taking care of D’s meds, and little Maya so she better understands what she’s dealing with in regards to her brother, are more important.

Finally, we also discussed school.  We are going to ask the teachers if they can tweak a few things in his daily schedule.  These include:
•    In the course of his long day (with those long sitting sessions), getting him more frequent ‘physical breaks’.  We need to find out how this is going now, as neither of us are sure what this looks like right now (We’ll adapt when we find out more)
•    No more going to the library in the morning before class starts. He needs physical activity to better focus.  D’s teachers and aides have given him this choice, we agree this isn’t a choice he needs. He has to get his physical energy out so he can have a better day
•    When he is waiting for the bus after the long, hard day – get him up and moving
•    At some other time in the day, test to see if he can get to the library on his own, and get back to the class, without his aide’s help

It can’t be overstated that Demetrius needs some ongoing and somewhat vigorous activity in his mornings to get him focused for the day. If in fact we can do this, I’ll be real interested in seeing – in conjunction with the adjustment of his meds – if we see a change in his focus and frustration throughout the course of his day.

Dr. Amy meetings are always interesting and educational.

Posted by Jerry in 01:51:23 | Permalink | Comments (5)

Monday, September 22, 2008

Feels Kind of Like The End?

Last night I had to drive around North Fulton County looking for gas, with my lawnmower gas container in the trunk of the van.  I managed to find, just luck really, a QT truck pulling into a station.  I quickly followed and was able to fill up…I was worried, we have an appointment at the Marcus Institute today, and I don’t ever like to miss those, you know, rain, snow…or gas shortage.

We haven’t had rain for weeks (thank goodness we’ve had a cool summer) and now with the gas shortage here in the Southeast, kind of feels like a test run for the end-of-the-world. 

Last night while getting gas, one guy had this really angry look on his face.  When he saw me filling up my lawn mower gas container he asked me, “What was that for?” I told him I put the lawnmower gas into the Van to ensure I could drive to find gas, and needed to replace it. I didn’t stick out my peacock feathers, but I didn’t back down or not make eye contact either.  He hurumphed. 

When the end comes, it won’t be pretty, alot of people will go postal I think because they had to put regular unleaded in their BMWs and Mercedes’. That’s going to be the trigger to the end of the world…at least I think that will be the case in North Fulton County.

Posted by Jerry in 13:29:58 | Permalink | Comments (1) »