Friday, October 31, 2008


Just two hours in line. The boys don't have school on Tuesday, so I figured even a two hour wait today was easier than a 15 minute wait on Tuesday. And one never knows, here in battleground OHIO, the wait could be even longer on Tuesday--it was in 04.

The crowd was orderly, friendly, upbeat.

Thursday, October 30, 2008

Trick or Treat or Tantrum

Something as simple as Trick or Treat night is never easy in our house. Are these not two really really cute boys?? I sure think so. Do you notice the grumpy one on the left... He tantrumed for a good hour before time to go out. He tantrumed while we took pictures. He sassed. He mouthed off. He was told about ten times that if he didn't clean up his act he was not going trick or treating. Well... He was so naughty we finally had to make good on the threat. While I'm writing Dave and Joseph are out gathering treats. Alex is at home sniffling and getting ready for bed. Do you think he is trying to get my goat while I ignore him? "Next time you choose some one else..." I have a pretty good idea where this is going. "Next time I hope someone else picks me to be adopted." Yep... That is where I figured he was heading. I've known all along the day was coming when I was told that I wasn't his "real" mother. I've known that he would try to hurt me--because he can. And because that is all he thinks he has--power to hurt. Any power is power. Ah... the dear, sweet, oh so heartbreaking child. He misses Halloween Trick or Treat because he wants to hurt me. I hope and pray that someday he will learn that when he hurts us, he hurts himself even more... I think it is time to go try to give him a hug and a cuddle and settle him down a bit.


After sniffling, and being mad at Daddy, and sniffling some more, and saying "I don't care about trick or treat." He said "Other kids at school can read big books and I can't." Ah... Maybe this isn't all about Trick or Treat. Maybe it isn't all about Daddy.


Daddy calls. Does Alex want to go out now? Daddy will come back for him and let him go out for the second part of Trick or Treat. What a great Dad.


Through all of this, our doorbell does not ring. We live in such an isolated place, no trick or treaters venture down our road.
I'm going to go take a shower in an empty house.

Wednesday, October 29, 2008

Whenever I watch the news coverage of natural disaster the following is always in my mind: Somewhere in that mess there is a Joseph, and a Mom trying to cope with the disaster and a Joseph... I'm usually so close to the edge that small things push me over or at least push me off balance. I'm afraid I'd crack if my only option were a Red Cross shelter with Joseph-- So, when this arrived in my inbox just now I thought--What a great, great program. Perhaps this will be the organization that gets all of my Christmas donations this year!

AutismCares is a consortium of leading autism organizations who have come together to support individuals with autism and their families during natural disasters and other catastrophic life events.

AutismCares understand that families living with autism often need additional and specialized support in recovering from critical life-challenging events. Leading autism organizations, along with committed individuals in the community have come together to support families in their time of need.

How Does AutismCares Help Families?
AutismCares assists families who meet the eligibility criteria to cover costs associated with housing, automobile repair, insurance premiums, medical care, prescriptions, daycare, funeral expenses, and other items on a case-by-case basis. In most instances, payments are made directly to the vendor providing the services and not directly to the family. Assistance provided can not exceed $1,500 per family.

AutismCares supports families who meet the following criteria:
Have one or more children diagnosed with an autism spectrum diagnosis

Have a combined family income of less than $65,000

Have, within the previous 90 days:

Been the victim of a natural disaster-fire, floods, hurricanes, tornadoes, severe tropical storms or windstorms, and earthquakes

Suffered a death or critical illness or injury in the immediate nuclear family

Been the victim of a violent crime

Lost their home through foreclosure, or eviction

Primary income earner experienced termination of employment Lost their home through foreclosure, or eviction.

How Do I Apply?
Complete an online application

Applications are reviewed on a monthly basis. Deadline for an application is the 15th of the month. Applications received after the 15th of the month will be reviewed the following month

Families are notified of the results of their application by phone or e-mail.


Tuesday, October 28, 2008

Code for Race and Knowledge

Is it my imagination or is do we use "experience" as code for knowledge the same way we use "terrorist" or "Musilim" as code for black? As in "Palin doesn't have the experience to be VP," instead of "Palin doesn't know enough to be VP"... She has been a Governor, she has appropriate experience. She just doesn't demonstrate knowledge of the issues, or basic, thoughtful curiosity about the world... But to say that in the media or in a campaign would be too much in the same way that one doesn't say "Obama can't be President because he is black." So we lie and say he is a terrorist or a Muslim and she is inexperienced.

Sunday, October 26, 2008

A beautiful day

for a walk in the woods, a hay ride on a wagon pulled by a tractor, and a hot dog cooked over an open fire. I love autumn!

Friday, October 24, 2008

Sarah Palin Speech on Special Needs

I'm home this morning, nursing a sinus headache. I caught the live coverage of what the news channels call "Sarah Palin's first policy speech." She talked about the McCain Palin administration's plans for special needs children, teens and young adults. I was impressed. She said all the right things. She delivered a serious speech with a serious tone. She dropped all the snarky jabs at Obama. She was humble about how she is a rookie as a special needs parent. She stopped herself from calling autism a disease. She acknowledged that special needs are not just an issue of cute little kids. Adults are involved. She talked about providing full federal funding for IDEA. If Obama wins, she has done us a great service by delivering this speech, putting these issues out there as important enough to merit attention 12 days before an election. I don't think the speech will change votes... but this is the first time I've seen Sarah Palin do anything I found noteworthy.

Thursday, October 23, 2008

A bit too serious, perhaps, but still worth a watch

This was worth sharing, I thought--and he does shave his beard for the cause--  
See more Ron Howard videos at Funny or Die

Tuesday, October 21, 2008

Disability vs. Disease

There is a lot of discussion out in the blogisphere about Autism. Is it a disability or a disease? Is there a cure? Should we be looking for a cure for all disabilities, or celebrating our differences and learning to live with our disabilities? I think the obvious answer is that we do a combination of both. We do what we can to prevent and cure—be it diabetes, cancer, flu, mental illness, autism, or what ever. But we accept and deal with what we can’t cure or change… I think this is in part the difference between having a five-year-old diagnosed with an autism spectrum disorder and having an eleven-year-old with the same. Somewhere along the way you learn that the only hope isn’t a cure. There is great hope for a good life, or at least great hope for many, many good moments in life with autism. As the caregiver, the sibling, the parent, the teacher, or the relative of the autistic person, and as the autistic person… or the person with autism… however you want to say it.

The paragraph above is my reaction to the following:

This is a rush transcript from (Greta Van Susteren’s Fox News show) "On the Record," October 20, 2008. This copy may not be in its final form and may be updated.

  • VAN SUSTEREN: We had a rather sobering experience inside the children's hospital.
  • MCCAIN: We visited one of two pieces of equipment that can help diagnose autism at its early stages. And it is sobering. It's a very sobering experience because autism is a disease that is more and more prevalent each day in the United States, and there's no cure yet. We don't know what's causing it and what it is, and families are afflicted every day with it.
  • VAN SUSTEREN: And I suppose Governor Palin certainly said at the Republican national convention that, you know, special needs children is...
  • MCCAIN: Yes.
  • VAN SUSTEREN: ... is something that, you know, is one of her passions.
  • MCCAIN: Yes. She's -- as you know, they are parents of a special needs child. And we're so proud of them because their family is just such a lovely family anyway, but this special needs child has brought so much to them also.

There is a well-meaning sentiment here, and I want to relate to Cindy McCain because she is an adoptive mom, but I don't relate to her. Her words sound like sympathy, almost pity.   I've been thinking about this because of recent post and discussion on Autism Vox...  Some of the discussion is so tiresome I'm not even going to link to it.  You can find it by going to the blog on my blog roll.

Oh, and where have I been???   A piece of EQUIPMENT that can diagnose autism???? 
Is this a brain scan that finds markers?   Why do I think this is a very narrow part of the picture.

Friday, October 17, 2008

Old photos of Joseph

I've been trying to send some old photos of our Joseph to Jerry's friends who also have a Joseph, and both Josephs have a unique genetic disorder--not the same disorder--each has a genetic arrangement all his own.  The email version didn't work, so I thought I'd try the blog.  Since I didn't start blogging until Joseph was 8 or 9 I've never posted baby photos.  Getting these out reminded me of how far we have come--has it really only been eleven years!  These photos from 1997 seem like a lifetime ago. They are--Joseph's lifetime.   The first is from the hospital when J was born.  The second is a few days after the first clef lip surgery.  His lip is very swollen, but the lip is all sewn together.  As you can see from the third photo, the surgery did a good job!

I remember having the crib set up in the family room so the night nurses could move around, watch TV, get to the kitchen, etc.  Joseph couldn't be left alone--ever.  If the trach would plug, he would not be able to breath.  

A few years later, he looks pretty good, but still has the trach and the hearing aids.  I'm thinking this is 2000? Ah, memory lane.  

And all of this is hard for Alex.  He saw me looking through Joseph's baby photos and he wanted to see HIS baby photos.  We don't really have any.  We have a few from his foster family... and I need to go through that material to find those to put in an album for Alex, but two or three photos compared to two or three albums full of baby photos...  it is hard to explain.


Thursday, October 16, 2008

Autism and Down Syndrome

I was confused during the debate last night.  The candidates wanted to reference children with special needs--and McCain, I think, was trying to push Sarah Palin's expertise on the subject.  As far as I know, Palin's only relevant credential is as a brand new "Miracle League Mom."  Her 5 month old baby was born with Down Syndrome.   But McCain talked about her expertise with Autism???   Obama picked up on it and also made a brief comment about how autism is on the rise...    How did we get from Down Syndrome to Autism???   Is anyone else confused?   Does Down Syndrome not have a high enough profile and Autism is a more common disorder, thus talking sympathetically about Autism would reach more voters?  Do people not understand the difference?  I can believe that some people may be ignorant, but not educated people--not McCain or Obama?   Or, not if they are going to talk about it in a Presidential debate.  I found it distressing.  

Our Joseph has had a rough 24 hours.  Report from school yesterday was he fell apart at the end of the day.  He had a rough night.  No fever so I sent him to school this morning with instructions to call me if he had trouble.  I got the call at 1030.  I picked him up and took him straight to the Dr.  No ear infection.  Maybe a sinus infection.  Give it a day or two before starting antibiotics...  It is hard when he can't tell us what hurts, where, how much, how long, etc. etc. etc.   He just knows he doesn't feel well, so he acts out.  Welcome to the world of the Miracle League Moms.  

PS  I just read on Autism Vox that Palin has an autistic nephew.  Perhaps McCain could have made that clearer, if that is the source of her expertise.  As it was--it was just confusing...

Tuesday, October 14, 2008

Morning people

Most of my life I've been a morning person.  I jump out of bed ready to go.  Wide awake.  My best work gets done before noon.  Late afternoon is hard.

That is, most of my life.  Of late, I'm neither a morning person, or an evening person.  I crawl out of bed and straight to the coffee pot.  This morning was particularly hard?  I wonder if this is yet another symptom of not taking the best care of myself, or is this just age???  I thought I was supposed to need LESS sleep as I aged.

Whine, whine, whine...

Sunday, October 12, 2008

Under the Weather

We had a big weekend planned--and I started getting sick Friday night.  I managed to get through the whole day Saturday before crashing for the whole day Sunday.  Dave and I cleaned house Saturday morning and then took the boys to hear the OSU marching band before the game--  The band plays a free run through of the music for the game starting two hours before kickoff.  They draw probably 5,000 to hear the show.  I was supposed to be on the floor with the band, but we were late, and ended up in the stands.  Ironically, we sat next to an elderly man that had been born with a cleft lip and palate.  I had noticed how his profile resembled Joseph's, but thought he must have tooth issues because of age.  He stopped Dave as we were leaving to introduce himself and proudly told Dave his cleft had been "bilateral."  He was very interested in Joseph.  So, it ended up being a great blessing that we were late and NOT on the floor with the band.  

The boys went to a day camp on campus during the game.  It is held in the student rec center.  They swim, play, watch the game, and hang out with other kids.  It is easier than finding a sitter, and costs about the same.   I like including the boys in game day activities.  

The game itself was a snoozer, but we had tickets from a colleague who has GREAT seats.  We were surrounded by players' friends and family.  Row nine, 40 yard line.  Absolutely fascinating to sit that close.   It is a whole different experience than we have in our usual seats.

The cherry on top of the sundae for me Saturday was seeing two friends--one I used to work with that moved on to bigger and better things, and one from our old neighborhood.  I miss them both so much.  I must do a better job staying in touch.

Wednesday, October 08, 2008

okay, now what do I do???

Joseph's latest trick--Let's climb on top of Mom's pretty desk in the living room.  The one she keeps locked with all her most precious things safe behind the display glass.  Yes, I know I should be worried about my child, not my china, but REALLY!!!  I asked Dave about it--Dave says Joseph's been doing this for the past two weeks.  Where have I been?  Tonight, I just turned out the light and left him up there for awhile.  He hasn't figured out how to get down without help--and despite the risk of breaking bones and/or bone china, I left him up there for a few minutes...  When I went to help him down he seemed genuinely interested in getting his feet on the floor.  

Sally--Do you recognize the desk?  

Sunday, October 05, 2008

Surviving the Amazing Race

My closet obsession, over the past few years, has been reality TV. Survivor, the Amazing Race, and Big Brother are fun and entertaining. Yes, I know it is a waste of perfectly good time. I could be reading or sleeping or staring at the wall and I’d be doing something far more valuable. I’ve justified my obsession with phrases like “I just need to relax at the end of the day…” Even I don’t buy my lame excuse. I’m hooked. I’m writing today to confess that my obsession has taken a turn for the worse.

A new season of Survivor and a new season of the Amazing Race have both started and I’ve not watched a single minute. Why not? Have I been cured? Not a chance. I’ve been too busy watching the most incredible reality show play out on the “news” channels. I don’t have a editorial team packaging the footage from each week’s activities on the “island” into a one-hour show for me. So I have to do it myself. I have to watch CNN, FOX, MSNBC, the Comedy Channel, and Saturday Night Live and make my own editorial decisions. The night I caught myself combing through hits I found after searching “Levi” and “Wassila” on Facebook, before we knew the identity of the real Levi from Wassila, I knew I was hooked on a whole new kind of reality television. (By the way, I think I saw the real Levi’s page before it was pulled off Facebook, but I didn’t pay much attention to it as I was distracted by the “wrong” Levi…)

The cast of characters is perfect for a real reality show, balanced with racial, gender, and age diversity. There is eye candy—personality—and enough back-stabbing-game-play to make a reality show producer drool.

I can look at poll numbers and read the New York Times, and appear to be doing something useful. Or I can read every blog I can find from Alaska and twenty or more comments about an op-ed in the Wall Street Journal, comments written by folks who don’t know any more about any of this than I do, and know I’m just getting my fix.

It really is a terrific show. I wonder if I’ll be able to watch Survivor and the Amazing Race again after Nov. 4? Or will they just seem lame in comparison?  Especially since I'm on the "jury" for this show.  I have a vote.

Friday, October 03, 2008

Fact Check

Okay, so Dave still gets credit for going to camp with Alex.  However, when I picked up Alex at school the next day, he told me that Daddy didn't stay at camp.  After everyone went to bed "Daddy went back to the office."  I thought I'd better check this one out.  Turns out that Dave was needed at a business meeting the next day in Indiana, so after lights out in the cabin, and after being sure there was enough adult supervision in his cabin (there were two "extra" men on the trip), Dave drove to Indy, stayed in a Super8, and went to his meeting.  

Funny, he never mentioned any of this to me???   Is there a serious communication problem in our marriage.  Please don't answer that.... 

At least he didn't stay in a nice hotel.  

He still had a better than average dinner waiting when he got home, because I'm just a nice person--and I'd already thawed the meat...