Sunday, December 30, 2007

New Year, New You

I did a much needed template update for this blog.  I am going to work on assigning labels for the individual posts over the next several weeks (it's the librarian in me) as well.  I hope you enjoy the new look!  

W is for Worksheet

Just when I thought I would be without a cute Jimmy story this morning.  I was so tired when Jimmy's therapist arrived this morning that I forgot his first words to her.  Session always starts with a trip to the bathroom, but Jimmy wanted no part of it.  His first request - "I want worksheet."  As an activity to work on his sitting,  they do some math worksheets.  She models one problem and he takes off on doing them.  She wanted him to go to the bathroom, so she explained that there was no worksheet until they had a trip to the bathroom.  He responded "W is for worksheet!", very emphatically.    

Christmas Break Winding Down

It's been a pretty good break with the boys.  I managed to take both to the mall yesterday by myself.  I don't think I have done that since we lost the double stroller.  Of course Jimmy rode in the single stroller and Jacob walked.  Both did pretty well, though.  The only thing on my list that I didn't manage to do was Starbucks in the middle of mall.  A line that long was a recipe for disaster.  We stayed up to watch the UFC last night, but I had to turn around and get up for an 8 a.m. therapy appointment.  Fortunately we were both late.  

I need that coffee now.


Friday, December 28, 2007

A nice day

Aside from the layoff, today was a good day.  I saw Melanie for lunch at Panera.  I saw my friend Beth and her husband and boys.  They are in from California and I honestly haven't seen her in years.  We took the boys to House of Bounce and for pizza today.  Jacob was a bit of a pill at the end, but we had a good time.  It was really good to see her - as I have said before, I don't keep in touch with people the way I should.  But seeing her is a reminder that I should try harder.

My husband has left the building...

He is on his way home.  I feel awful... my initial excitement about his interview is tempered by the fact that it was one of his Hail Mary passes, where he applied for something on Monster that isn't something in his field and job is very vague.  Still, it is not even New Year's yet and I can't imagine too many people doing a lot scheduling before the holidays are over completely.  I am totally harping on the guy too - "Did you see this job?," "Did you apply for this?"  I can't seem to help myself.  Maybe I should try harder.  As if autism wasn't enough of a variable to deal with...


Welcome to the ride...

Thursday, December 27, 2007

Autistic Kids - The Sibling Problem

"The "typically developing" siblings of autistic children are, in fact, the furthest thing from typical. Often, they are wiser and more mature than their age would suggest. And they have to be, given the myriad challenges they face: parental responsibility; a feeling of isolation from the rest of their family; confusion, fear, anger and embarrassment about their autistic sibling. And on top of all of it, guilt for having these feelings."

An important subject finally sees the light of day...  To my many friends, if you get a chance, please read this.  


A positive sign

DH just checked his e-mail and got an invitation to interview from one of the resumes he sent out.  I am sort of unclear about which job it is, but I feel better that he has one interview lined up.  I think he needed a positive sign as well - tomorrow is his last day!

I feel like poo...

I can't sleep.  I have the cough.  The one I wait for all year that turns into a month long battle with bronchitis.  It's arrived.  Lucky me.  I am coughing so much that I have abandoned my bed so my spouse can get some sleep.  I have Sudafed and cough medicine in me, so it is a mix of being too restless to sleep in a body that's ready to fall down.  Part of me feels like I should wait to go to the doctor until it presents with more symptoms, but the other part just wishes I would hurry up and get there so I can get the requisite drugs and get better.  When your body does the same thing once a year, every year, at roughly the same time, can't they just phone it in?!

Jimmy's fascination with the Boohbah episode entitled Islands continues.  He watched it six times in a row yesterday.  I cannot wait until it falls off the OnDemand rotation.  I can't remember if I mentioned it before, but the week we get back from break, Jimmy finally has his appointment for his psych evaluation.  It's an important step in getting him waivers for respite and other community based services from the state.  Of course the waiting list is years long, but I am thrilled at being closer to getting on it.   

Tuesday, December 25, 2007

Merry Christmas!!!!

So another one has come and nearly gone.  The boys had a good day, making out like bandits as usual.  I am glad the food fest is over.  If I can ditch my cold, I am back at the gym Thursday.  That was the only negative - that I was under the weather today.  I think the whole job situation is making it go a little faster this year.  The 25th has sort of lived in the shadow of the 28th for the past few weeks.  I want to get the tree down, get my husband through the next three days, and move on to what's next, whatever that is.  I am still hoping that he gets something fairly quickly and much closer to home.  

Jimmy did pretty well.  We went to my mom's, which is the first time we have done that in a while.  Of all the situations that can present themselves to us, taking Jimmy to someone else's home, even my mom's, is the most stressful.  It's a new environment and he wants to check everything out.  If the house isn't child proofed, Lord help us all.  Any kid has that problem, but it is to a much greater degree with Jimmy.  He kept wanting to go into my stepdad's room, which was the one room he was forbidden from entering.  Who can blame him?  It's all trains!!!  We all survived to face another holiday next year.  

I hope everyone had a wonderful Christmas.  Remember, 365 shopping days to the next.  (No, I am not wrong.  It's leap year in 2008!)  

Monday, December 24, 2007

Pantless at McDonalds

We took Jimmy to lunch at McDonalds today. He came out of the tube construction without his pants. We had to send another kid in after them. No, I am not making this up.

Autism is priceless...

An Interview with Jamie Lynn


A Christmas Eve laugh for you...

Sunday, December 23, 2007

Good Morning...

I woke up hearing Jimmy downstairs.  He was almost chanting "Presents Now" as he was at the tree unwrapping gifts.  Only the ones for him and his brother, all of which will be rewrapped.  At least he read the tags.

Saturday, December 22, 2007

Decisions, decisions...



Which should I buy for Jimmy over the break for his first day back?

On the first day of Christmas...

We are stretching our celebration out into four days this year. Day one was spent with a morning therapy session with a community outing to the mall. He is doing a much better job of walking with an adult, but anytime he has to wait in a line, he goes limp. I won't completely knock improvement, but we aren't ready to be stroller free. And it will be a long time before I can take both out solo. But you have to start somewhere.

Shortly after we arrived home, Uncle Mark arrived. It had been awhile since he had been for a visit, which went fairly well. Except for Jimmy peeing in his cup... he was shifting around as I went to try to get him to the bathroom. Just leaked right there, as he was drinking his medicine (I have never seen anyone move as fast as Mark did to get out of the way.) So Jimmy used his cup... I can feel you cringe, but this is my life. It's why my house doesn't really get clean or neat - I can barely stay ahead of putting out the fires. It's an effort just to get him to keep his pants on at home. Unless you are living it, it is so hard to understand what we go through.

Yeah, I wish that it had been the perfect visit, but I can't knock it - the husband made prime rib for dinner. The food was great. The boys each got a present early as Mark opened his, so Jimmy got his little Padme and Anakin action figures for his Galactic Heroes set. Rosa, their old sitter, dropped by with gifts for them as well. They both were very happy to see her as well.

Tomorrow is another packed day. We have therapy for Jimmy in the morning, a visit with Auntie D in the afternoon, and I am planning to Jacob to a kids church service here in town tomorrow night. Hopefully I can fold some of the clean clothes in the basement and put a dent in the loads of work I have to do over the break. I get the feeling it will be over before I know it.

Friday, December 21, 2007

For those keeping track of the car saga...

The guy who hit my husband and son plead guilty to "Failure to maintain proper control" of his car on Thursday.  He had his case continued once and my husband was subpoenaed to appear.  I think the expectation is that, for misdemeanor traffic offenses, people won't honor the summons and the driver charged gets a lucky break.  When my husband appeared and gave the prosecutor his side of the story, our bad driver decided to plead guilty to max instead of drag it out.  The $250 fine he got was the max, but I wish he could have lost his license.  

A Needed Break...

The holidays are here.  I need a break.  My husband is off with me until Wednesday and then returns to work for his last two days.  It's sort of weird.  I am okay with it at the moment... then I drop and want to breathe into a paper bag a whole lot.  The poor guy has several dozen resumes out there, but I think every HR department in the metro area is sitting on them until New Years.  The worst part is, even when I try, I can't shut up about the whole job thing.  I am just pecking away at him and he hasn't even stopped working.  Heck, he has round three with his back coming up in two weeks.  And I am asking, "How many resumes have you sent today?  Has anyone called?"  Now that I think about it, I hope I don't go completely insane over the next 11 days...

Jimmy decided that he wanted McDonalds for dinner.  He started crying as we drove past it, then started yelling "Chicken and fries, chicken and fries!  McDonalds!!!"  Then he started saying "Now!!!"  Such a basic word, but I have never heard him use it before.  Now... It was such a burst of communication - I was very taken aback.  It was pretty thrilling.  And, yes, he did have a Happy Meal for dinner.    

Monday, December 17, 2007

Autism Study Lends Credence to 'Fever Effect'

"For the first three years of his life, Rene Craft's son, Jackson, communicated primarily through screaming tantrums. He never spoke. He didn't point to things. He didn't make eye contact. He had the classic signs of severe autism.

Then a couple of years ago, Jackson got sick. His mother, Rene Craft, says he was running a high fever.

"He was lying in our bed, and he was recovering," Craft says. "And he said out of the blue, 'I like the sheets, Daddy. They're really comfortable.' And then later that day he looked out the window and he said, 'Oh, it's raining, and squirrels eat nuts."

Craft says that she and her husband got a brief glimpse of a son who had been locked in his own world of autism. Then the fever went away, and so did Jackson's improvement."

This is an interesting article. Thanks to Edwin for sending it to me. I am going to go to bed finally. Maybe I will dream about what he would say to me if he could. He has thoughts, ideas, even a sense of humor and its all locked up inside. I long for a day when it will all come out.

Autism, Welcome to My Inner Circle...

For the longest time now, I have felt like Jimmy was one in 150. It's the statistic, it's the norm now. I figured I probably knew more autistic kids by benefit of being a parent of one - people who we met through autism rather than people we had know having kids with it. Today, that all changed.

We got a Christmas card from a couple we have know for years - someone my husband worked with in the comics industry. Taking you back... he, an incredible creative individual in many ways, got engaged and married this wonderful woman. We hung out a bit, until we started having kids. Then it got a little harder. I think as Jimmy's problems became more obvious, we both started to shut people we had known in the past. I had my friends from Mason, women who having been walking this road with me since the day autism entered my vocabulary. The husband has been sort of walking alone. Both of us found our paths easier than constantly having to explain or apologize for what has happened with our son. I will freely admit that I have shut my own family out to some degree, just because it hurts too much to have explain or defend or justify.

At any rate, eventually they moved away and we didn't stay in touch. In part for the reasons above, but also because regular old life has kept us extremely busy. Today, their family Christmas letter revealed that their son had recently gotten a spectrum diagnosis. The husband is crushed, but I am just shocked. I think maybe we collectively have 50 people that we consider friends between the two of us. Relationships are hard to maintain in adulthood in the best of circumstances. These are the people who we manage and even work at staying in touch with, even if we don't get to see them the way we would like or should. People he knew from his store, people I knew from grad school or my job, people we know now. Of those 50 people, not one had a child with autism or anywhere on the spectrum, save us. Until now.

By my estimation, that isn't 1 in 150. That's 1 in 100. The activist in me would really like to know how many kids it takes to make autism a national emergency, so people are motivated to find a cause, a treatment, and a cure. So kids like mine can speak and interact and live a more normal life. So families don't feel like they have to hide or apologize because their child doesn't act like his or her peers. How many kids and how many families have to suffer before the rest of the world cares or acts? Or does it have to strike everyone's inner circle first?

Friday, December 14, 2007

Wednesday, December 12, 2007

A follow up e-mail...

Someone e-mailed the husband about a job today.  He is still pretty out of it, so he will answer it tomorrow.  It's our first line on something else.  I don't know if its the job for him, but it is a place to start.  I was telling him I just needed someone to respond to feel better.  It worked.

Shot number two has left him in a lot of pain.  Want to know what it looks like?


The left side seemed to have worked with last round, so this focused on the right.

Tuesday, December 11, 2007

Date Night

We went out tonight.  He took me to see "No Country For Old Men."  I generally like the Coen Brothers, but I am not a fan of this.  Depressing.  But the husband's the one having surgery again tomorrow, so I indulged him.  He is kind of having a run of it - the injuries from the car accident, the job thing...  I think he is healing from the car accident, so it really isn't as much of an issue.  But to have that and the job thing and having it all come to bear during the holidays is a bit much for anyone.  He still is cranking out the resumes, but he hasn't gotten a call for an interview yet.  It's only been a week and a half, but I can't seem to get that through my head.  
My sister is begging me to look at it like a three month paid vacation - before I make myself completely mad.  She is probably right.  

I would say my sister is better at rolling with the punches than I am, but I don't think that is entirely correct.  She has long said she could not handle the situation I have with Jimmy - having to advocate, the unknown of it all.  It's never easy, but it is what I am used to.  Her husband got laid off after 9/11, not once or twice, but three times.  She is used to that, that uncertainty, being stressed out about when he was going to have a reason to get off the couch (I say that jokingly - my brother-in-law is a great guy!) or how the bills were going to get paid.  Heck, they went through foreclosure.  Money stuff makes me crazy.  Maybe it's true - God gives us what we can handle.

I just hope the Almighty helps with the whole interview thing, because I think He may have sorely misjudged me...

Never anger PETA

Oh my...

Monday, December 10, 2007

Freaking hysterical...

I was just checking my IP addresses to see who has been reading and found that my Jif post was read by the J.M. Smucker Company.  Hope you didn't mind the shout out.  If you want to send me a year's worth of peanut butter, just e-mail me!

Too funny!

A sick kid...

Jacob is running a fever, which means I have a day off tomorrow.  It's bad timing, with a lot going on at work and having to be off Wednesday afternoon.  These things happen, I guess.  But it sucks.

Saturday, December 08, 2007

Buying stock in Jif

Jimmy ate a cubed peanut butter sandwich today without any prompting whatsoever.  His therapist got it ready and sat it in front of him to start working on the food program and he just dove in!!!

Thursday, December 06, 2007

Meeting with Jimmy's Teacher

I had my first lengthy one-on-one meeting with Jimmy's teacher. When you are dealing with a cast of a dozen characters in helping and educating your son, direct face time is scarse. It is also the most valuable thing you can have.

Allison is amazing. It is her first year teaching, yet that doesn't scare me. I think initially she was overwhelmed, but this is now her life and passion. I honestly think she wouldn't have it any other way. It can be so hard to be Jimmy's mom sometimes - I carried that boy inside me for nine months. I have loved him more fiercely than I have loved anyone in my life. I need to know the people who I turn him over too for so much of the day love and believe in him.

I have always felt that Mr. Booty (the instructional assistant) believes him and now I know Allison does too. I am thrilled. She is anxious to continue consult and working with his therapists, which I think is great. I walked out of there for the first time this year really confident in his school situation. That helps me get through everything else I have to do with my day personally and professionally. It's huge.

Wednesday, December 05, 2007

Hey...T...

Why is your phone always busy?

How to spend your snowy evening? Posting your husband's resume on hotjobs.com, careerbuilder.com, and monster.com. Am I good or what?

Please let there be a two hour delay tomorrow morning!

Tuesday, December 04, 2007

An odd side effect...

We have noticed something odd.  We tried Strattera for several months with Jimmy earlier this summer and fall.  We had a marked increase in his fecal fixation.  We stopped it a few weeks ago and, well, we haven't really had the problem since.  Kind of nice, I must say.  

I am getting ready to try something else in terms of medication.  I figure the upcoming Christmas break will give us the opportunity to try something new.  I just need to get into the doctor again. Anything to get him less hyper and more focused.  When he is more focused, he talks more, he is more engaged, and he is less prone to tantrums.  There is no magic pill for autism, but I am still hoping to come across a medication to help some of the more trying aspects of his behavior.

Sigh.  If there was only a magic pill...

Monday, December 03, 2007

FAPT Today

Services were continued.  Thank God for small favors.  The school staff sent in this glowing report of progress being made without any data to support it.  Our therapist provided actual data demonstrating regression over the past several months.  I am so frustrated with the school system - I want to hear good things about how Jimmy is doing, but you can't ignore the problems and the lack of progress in some areas.  

The speech therapist has asked that the goals be modified - they were great goals, but there is no evidence of data collection in these new ones and the benchmarks have been set too low.  The reinforcement plan in the last IEP wasn't followed.  I still have not seen a BIP from either the consult or the school.  We haven't addressed the gym issue for the winter.  Looks like I get to call an IEP meeting.  

Sunday, December 02, 2007

Saturday, December 01, 2007

Waiting for the Sunday paper...

Jimmy went to McLean Bible Church for respite today.  He has such a great time there and the people in the ministry are just so wonderful to us.  I ran into Melanie briefly, but she was working in another room.  I went to lunch with my friend Amy.  Jim took Jacob to the Christmas parade and sat with a friend of mine from work and her son.  I think it was a fairly nice day all around. 

DH's job search kicks off in earnest tomorrow, with the arrival of the Sunday paper.  I think I applied for about 8-10 jobs when I did my job search a year and a half ago.  Nine or ten resumes yield four invitations to interview, two interviews, and two job offers. I hope my husband's goes as well.  He is already up to five jobs applied for in five days. 

What a year - the car accident, his injury, and now this...  I am more than a bit overwhelmed at this point.  I know he is too.  Keep good thoughts for us.  And if you have any jobs in desktop publishing or need someone who know Quark, Illustrator, InDesign, etc..., send me an e-mail.  I know a guy...

  

An Update...

My husband has already applied for five jobs.  That should cheer me, and I do appreciate that he is throwing himself into this, but I just am in knots about him losing his job.  I know he is as well, so I shouldn't be complaining, but it's just awful.  

Thursday, November 29, 2007

A New Lullaby

Jimmy has taken to falling asleep on the papasan chair in my office.  He likes us to turn on Bjork on iTunes and have the visualizer on, with it's little light show.  All is Full of Love is his favorite.

Wednesday, November 28, 2007

It Wasn't a Bad Dream...

My husband still has a layoff notice.  We are kind of trying to figure out what to do next.  I also have FAPT on Monday.  I am going to beg that we don't reduce Jimmy's services this cycle as I don't think I could deal with another major change in our lives right now.

Tuesday, November 27, 2007

My Husband Has Been Laid Off

He got his pink slip today.  His last day is December 28th.  His job at USA Today was outsourced to Florida.  It could be worse - it could have been India.  I guess the rupee is doing better than the green back these days.  He has an English degree and extensive desktop publishing, layout and design experience as well as Microsoft A+ (he is working on his Net+ as well.)  So if you know anyone hiring...

I am freaking devastated.  But we have planned well and we should land on our feet.

Sunday, November 25, 2007

Thanksgiving Weekend is Over



The shopping is over.  For the most part - I think I have one toy left to get for each of them. Now to put up the tree and enjoy the rest of the holiday season.  We went out with my mom yesterday - no one ran off or got naked in the play area outside of JCPenney.  We bought a second baby for Mr. Rahr (light green dinosaur), only to lose him too.  If you are going to Build a Bear and can pick one up for him, it's $5.22 (including tax.)  We can't get through a mall trip without losing him.  I hope everyone had a wonderful Thanksgiving.

The Hard Sell


Dell is brilliant. Mixed martial arts is a big thing in this house, so this spot is so fun.

Friday, November 23, 2007

Melanie Saves the Day

Well, my mom did get stuck working, but we still managed to get out of the house.  My friend Melanie came to the rescue by helping me take the boys to House of Bounce, one of those inflatable moon bounce party places.   We spent an hour there, running around, jumping, and sliding down these huge indoor moon bounces.  A great way to burn off energy on a cold day.  We had lunch at Applebee's, which provoked Jimmy because he wanted to go to Walmart next door. So we went there after lunch.  Melanie is a huge help and an incredible friend.

Oh, big autism related news from yesterday - we solved our seat belt problem.  We found these Angel Guard clips that block the release button on the seat belt.  We used them for the first time yesterday.  We sat in traffic trying to get past the American Legion Bridge for over an hour and no one got out of their seats.  I am using it on both boys!!!  Best $20 I have ever spent!!!!  

Tomorrow is the belated shopping with my mom.  I so look forward to that.  She is the Queen of the Mall.  My foot injury is making me crazy, she hurt her knee, and we are both still going!

Thursday, November 22, 2007

Happy Thanksgiving!



Jimmy playing in the backyard of his grandparents.  He loved the sound of the wind blowing through the trees.



Jacob playing... with that damn purple dinosaur on TV.  I can't stand Barney!

I hope everyone had a wonderful day.  

Tuesday, November 20, 2007

No Black Friday for me...

My mom forgot to submit a leave slip for Black Friday. Her boss is being a prick, so now she can't go. Hardly the end of the world. My husband, however, is working too, so I am on my own with the kids. "On my own" means home alone. With both my kids at this point being runners to some degree, I can't go out with both of them. Jimmy ran on me the other night when I was trying to leave the gym. Jacob can be so disobedient these days, I am not sure I can try with him. My October outing to the Fall Festival didn't go badly, but certainly didn't go well either. I was pushing Jimmy around - Jacob ran once, but the rest of the time he was going "Don't you know who I am? I am the Juggernaut, bitch!" See the third X-Men film for the reference. Great - one with autism and the other with Tourette's! Joy! My life with these kids feels a little like a prison. I know many moms have that experience, but I just don't think they do with children this age.

I shouldn't be so negative, but I am really moody today. I hate the holidays.

Sunday, November 18, 2007

A Baby Picture to Share...



From day one, before the word autism entered my daily vocabulary.

Happy Birthday Becky...

Mi hermana is another year older. She's a great girl - most likely to win the lottery simply because in life she is due a break. She just is... She is witty and bold in ways I am not. Easily one of the strongest women I know. I love her more than life itself.

It's okay Becky, just grab the Kleenex.

I love you. Happy birthday, sis...

Looking forward to a very short week.

Saturday, November 17, 2007

Disturbing video

I can't remember what country this is, I want to say Serbia, but this video breaks my heart. For kids with disabilities like Jimmy (autism, MR, etc...), they are thrown away to the most horrific of institutional fates.

Yes, I am still here...

For a four day week, last week seemed like an eternity. The week was very long. Next week is only two and a half day, but it packed full as well. I am looking forward to having four days off over Thanksgiving. I have already broken out the Christmas cards to write, but I can't get too far until we get a photos of the boys to include.

Jimmy had a pretty good week. I got some nice notes from his teacher about how verbal he is, how much more engaged he is. I am pretty happy with his teacher this year, though I have had a rougher time getting the therapists and school on the same page. It's partly scheduling, but I think there is a certain amount of bureacracy on both sides. It gets frustrating.

Jacob continues to be Jacob. I wonder when this whole bad seed thing will pass - he makes me crazy and I really struggle with the disciplinary aspect. It is very hard for me to do, not so much as having two sets of rules, but two different approaches to negative behavior. I just feel like I can't win and I can't get it right with this kid.

Sunday, November 11, 2007

Losing Jimmy... and the Baddest Man on the Planet

Well, this morning started out badly... I briefly lost Jimmy at church. We arrived for his respite program and waited in a long line of other parents. Jacob was entertained by a service dog named Mason, but Jimmy was out of control, not wanting to wait. I put him on my shoulders, toted him around, held his hand. Anything to keep him entertained. When we arrived at the check in desk, he bolted to the back classroom area. Someone said, "He'll be fine." I paid my fee and went back to find that he had vanished into thin air. I yelled for him, yelled to see if anyone had him, and got no response. I looked at the back door - which immediately has another door to the parking lot. I was running on back and forth, calling his name and crying. Someone ran out the back to the parking deck. No sign of him. Finally he was found in a classroom. I have officially lost both my children at one point or another and it is truly the worst feeling I have ever known. I held him so tightly when I got ahold of him. I am starting to realize though that I am so overwhelmed by the both of them together that it limits where I can go and what I can do. Jacob will improve with age, but the next few years will be rough.

Tonight finished with an MMA event called the Baddest Man on the Planet. You could call it one of the craziest nights of my life. My husband writes for this website that covers mixed martial arts (think UFC, Randy Couture, Chuck Liddell) and we got free tickets to this local event. A bunch of local guys came for the fight. The fighter that my husband interviewed earlier this week Matt, was on the card. Matt's opponent didn't show up for the fight, so they put out a call among the dojos in the back to see if anyone at 205 was willing to fight. There wasn't, so he bounced out of the back room to check with Steve, on of the guys who came to the show with us. Steve trains MMA and has had some amateur fights/sparring matches. It was an amateur event, so Steve thought he should consider it. He pulled Steve away from buying a hot dog and took him back to the promoter.

Next thing you know, he is taking the the fight. They give him gear to use, The other guy from the board Chivo corners him, the whole nine yards. They introduce him with an acknowledgement of pulling him out of the crowd essentially, so the crowd was definitely pro-Steve. The trade one or two shots, Steve threw this great kick, and after that it is all a blur.

He got KOed and he says he can't move. At an event like that, they put him on the board and load him on the ambulance to the ER as a precaution. I was sort of bummed that he was fighting, because I was looking forward to talking to him between fights. Turned out we had plenty of time to chat between x-rays. It all worked out. He's fine, though, and on his way home. His wife has even forgiven him for doing it, I think.

It was sort of insane all the way around. But it was really nice to finally meet Steve and Chivo as well. A lot of fun. This was the second time I have seen someone I know step into the ring. But after KC and now this, I don't think I can ever watch another e-friend step into the ring. My stomach is still in knots.

At least he is going to have a great story for work on Tuesday.

Friday, November 09, 2007

I started reading Jenny McCarthy's book...

In earnest... I could make a joke like "Who knew she was literate?", but that would be primarily because her body was good enough for the airbrushed glory that is Playboy. They couldn't airbrush enough of mine away to make that work. But one of the introductions make an interesting comment. When your kid is diagnosed with cancer, people bring casseroles and hugs. When it is autism, they sort of turn away from you in the grocery store and quit calling for playdates. I know it is a very bitter commentary, but when I read it I realized that I felt much the same way. And so many more kids are autistic.

I think what is most striking is that he son's onset was marked by seizures, a much more dramatic arrival than Jimmy's autistic beginnings. Each story seems to be a little different. I'll keep you updated as the book goes.

Tuesday, November 06, 2007

Parent/Teacher Conferences

Well, I went to Jimmy's conference. They have actually moved him back on an academic track, starting him in the first grade math and reading books. He's gets one-on-one instruction, so he is doing pretty well. His PALS scores are sort of funny. There are three elements to the score - spelling, pre-primer word list, and letter sounds. Even though I have 100% spelling tests on the fridge from last year, he refused to spell anything for the assessment. He got 15 out of 20 on the pre-primer word list and 25 on the letter sounds - he wouldn't give the sound for W, even though he has done that before as well. He got 40. The fall benchmark was 39. Without performing one whole section of the test, he met the benchmark.

They actually administered the primer, 1st, and 2nd grade word lists. He got 15 primer, 16 first, and 9 second grade words correct as well on the assessment, all out of 20. Cognitively my kid is all there. It's just getting it out. We are also amending his IEP for his speech goals and the accommodations to include a weighted vest.

I have to go call out sick for tomorrow. I have almost completely lost my voice and I am running a fever. When your job is completely predicated on your ability to speak, losing your voice is sort of a problem. Getting through today was a major chore.

A new Jimmy pic for you... from a recent therapy outing to McDonald's.

Monday, November 05, 2007

Sleep at last..

After two days of him balking at his sleep medication, I finally got Jimmy to take it. He is fast asleep... which is good because I am sick and need the rest now too. Now if I can get Jacob off...

I finally got ahold of someone at the CSB. Jimmy's psych eval is going to likely cost about $500, an evaluation that needs to be completed before we get him on the DD Waivers list. I am going to apply for a community grant for the funds. It's absurd that it costs money to get on a list from which it will take years to see any services or results. I feel like life is about jumping through hoops and it always will be.

Sunday, November 04, 2007

Up All Night

The local police have had a helicopter hovering over our neighborhood for the past hour. Why does this stuff go down at night, never in broad daylight. Oh, and we have morning session tomorrow.

Ugh.

Saturday, November 03, 2007

Interesting Statistics

"Department of Education statistics indicate that the number of students with autism rose steadily, from about 42,500 in 1997 to nearly 225,000 in 2006. Meanwhile, the number of students counted as mentally retarded declined from about 603,000 to about 523,000.

CDC scientists believe education numbers are misleading, because they reflect only how kids are categorized for services. They say there's no clear evidence doctors are substituting one diagnosis for the other.

Some parents believe environmental factors — ranging from a preservative in vaccines to contaminants in food or water — may be important contributors. (The last doses of early childhood vaccines containing the preservative thimerosal expired in 2002, although some children's flu shots still contain it.)

Dr. Gary Goldstein, scientific adviser to the national advocacy group Autism Speaks, said the explanation for the rising autism prevalence is probably complex. Labeling and diagnosing probably play a role, as do genetics, but he believes the increase surpasses those two explanations.

"I'm seeing more children with autism than I ever would have expected to see," said Goldstein, who is chief executive of the Kennedy Krieger Institute, a treatment center for pediatric developmental disabilities in Baltimore.

Autism Speaks budgets more than $4 million each year to research the causes of autism, and about 90% of that has gone to genetics research. But organization officials recently have been talking about changing that mix, and spending as much as 50% of that money on potential environmental triggers, Goldstein said."

Sorry to leave you hanging...

Let's see... the boys went trick or treating on Wednesday. It was a mixed success - we went across town to stop at my assistant's house and then back to our own neighborhood. Jimmy did well for two house and then was brought home after melting down at some of the decorations. Jacob brought back a ton of candy in less than an hour. Thursday we had session and did our outing at Chick-fil-a, where we pissed off some guy when Jimmy dived over the back of the booth to get to his kids fries. He was really terse at first (which intellectually I understand) and seemed to calm down as I explained that he was autistic. It sort of set me off for a while, though - it is difficult to explain it all the time. I wanted to scream at him that he should be grateful that his kids were healthy and normal. I didn't, of course, but it wears on you.

Last night was respite at McLean Bible Church - I really needed it.

Tuesday, October 30, 2007

How to keep Jimmy from wandering the house...

Put on Sesame Street... as much as he loves Sesame Place, he is extremely adverse to the show. Runs out of the room every time.

Sunday, October 28, 2007

Birthday Party photos...







T took some amazing photos... I am going to have to hit her up for more. I think she has found another talent!

Saturday, October 27, 2007

Most Expensive Birthday Ever

Well, it stopped raining this morning. We were able to hold the party at the pumpkin patch after all, where much fun was had by young and old alike. There were three moonbounces and two inflatable slides. We bumped into Jimmy's teacher, whom he readily greeted with a hello. I didn't get any pics, but my in-laws and T all got photos, so I should have some shortly.

Jacob got quite the haul in presents. He got the Optimus Prime foam launcher toy, which he has coveted for awhile. He went behind the TV to retrieve a missing dart and PUSHED THE TV OVER. Killed it. I had to go to Walmart to get a new one. An extra $300 I didn't expect to spend this weekend. He is seriously on my poo list.

Oh, and we left the car door open as we were unloading it. The chief of police knocked on our door to let us know. He had the mayor in the car with him, out for a Saturday night patrol. They got a good laugh at my day. Just another quiet evening in Manassas Park.

Friday, October 26, 2007

Another Rained-Out Birthday

We have had a pumpkin patch birthday planned for Jacob for a month now. It's a part of a nursery, but has four moon bounces. Seems perfect for the kids. We've been in a drought, so it has been weeks since it rained. Until the past two days - and through tomorrow now as well. I have a plan B in place - Chick-fil-a, which has a small play place. But both Jacob and I are kind of bumming. But T is bringing her kids over and I have two good friends from working bringing friends for Jacob as well.

This is the second outdoor birthday I have planned. Both have been this year. Both have been dampened by the rain. Never again.

Wednesday, October 24, 2007

Little Boy Lost



Or maybe Mom is just overtired. The consult that was approved at FAPT six weeks ago has yet to be completed. It is harder and harder to measure his progress as he makes strides in some areas and slips around in others. The school didn't even do a proper report card for him - because they are doing nothing academic with him. Again, I have no sense of what he does with his day. There is no data collected for him at school, so I have nothing tangible with which to assess his progress. I feel like the wheels are spinning and time is slipping away.

I guess the bright spot is for the second day in a row, he was asleep by 8pm. Of course, Jacob didn't let me finally go to sleep until almost 11. Hopefully, I will get to sleep a little earlier tonight.

Tuesday, October 23, 2007

My day...

I went to Starbucks, only to have it take so long that I was forced to leave without my paid for coffee. Fortunately, my neighborhood store was nice enough to give me a free one this afternoon. I am home alone tonight, but I am going to medicate Jimmy at 7. Both the boys as well as myself need the sleep...

It's 3:30 am...

And I have been up for two hours. Jimmy is up pacing his room with some insane vocal stims. It's nuts. I dealt with it for an hour and then tried to fall back asleep with Jimmy safely in his room. Didn't happen. So I am up... And it is bookfair week, so I can't call out tomorrow. Ugh.

I did see the middle part of "Transformers" - it's a pretty good movie. No wonder the boys are so into it.

Monday, October 22, 2007

Poop Patrol

I have to listen for every trip to the bathroom now. How does a kid who was doing so well come to be one who can't help but to play in his own poo? It is making me crazy.

Friday, October 19, 2007

A Kick in the Teeth

So, I have been looking for a DAN doctor. Most aren't accepting new patients. I found one that I heard that wasn't. One that was listed as taking my insurance. She isn't taking new patients either. For some reason, I took this news really hard, harder than intellectually I know I should.

Her office gave me a reference to a doctor in Lynchburg - three hours each way. She was listed as accepting insurance on my company's website, but her website said that they are no longer taking insurance. Doctor's visits are $350. You have two of them in the first month. How depressing is that?

Why won't conventional doctor's look into this whole yeast thing? Why can't DAN doctors take insurance? Can someone please explain it to me?

Wednesday, October 17, 2007

For my sister Becky...

...who will likely file this under "You never shut up!"

Do your duty: come out and vote on Nov. 6
LETTER TO THE EDITOR
Potomac News
Tuesday, October 16, 2007

With the upcoming elections for state office rapidly approaching, I am saddened when I think the vast majority of registered voters will not even take the time to go to the polls. There are those who feel like a single vote won't make a difference or feel that the issues that the candidates are discussing are not relevant to their lives. If that's the case, it is a voter's responsibility to dig deeper.

For a voter like myself -- whose greatest passion and issue is the one that touches my life the most: autism -- getting the answers that are important to me requires more than just reading what arrives in my mailbox. Fortunately, I have found Jeanette Rishell, Delegate Jackson Miller, Bob Fitzsimmonds and State Senator Chuck Colgan more than willing to return a call and talk to me about what is most important to my vote -- the range of needs of autistic children and adults and how to best meet them in the public and private sectors.

All have been gracious, engaged, and attentive. Not one has offered miracles, but they have listened and promised to continue to do just that if elected.

As frustrating as politics can be at times, the right to vote is a gift that many in the world never get. I would encourage people to ask questions of these candidates, think about what is important to you, and vote. Democracy was never meant to be a spectator sport -- please be an active participant on Tuesday, Nov. 6.

Tuesday, October 16, 2007

A Shout Out to T



To make you feel better...

Celebrating Post 501...

I just looked at my Blogger Dashboard and it said I had 500 posts. I am kind of amazed that I have stuck with it this long.

Today, as is everyday, was one of highs and lows, dealing with the school and therapists, a career and two boys. Jimmy said "Goodbye Taylor" to a girl who ran up and told me that she was Jimmy's friend. Everytime that sort of stuff, I sort of mist up, usually with joy, but today it was a mix of grief. Jimmy is never invited to school birthday parties. Of course, we get invited to T's parties and some of my other friends with kids, but never any from school. There is a whole life of being a normal child that he will never, ever have. That I will never, ever share with him. It is painful in a way I can't even articulate because I love him so much and wanted so much for him. I still do, but is diminished in some respect by where he is today. He's in the tub right now because he climbed in the kitchen sink and pooped, still in his dress shirt from school photos. The school photos the school secretary forgot to give Jimmy's teacher for the class of four. At Cougar, he is well known, but is seemingly invisible in so many ways. There was the bus saga. The PTO snub last year, as well as the art show. And for the second year in a row, they forgot to give his class the picture form. How is that shit not supposed to hurt? (I know a few important people read this blog and I shouldn't swear, but you would swear too!) It is a pain that isolates you in this shared experience that people of a certain age have in raising a family.

But I am proud of him. Taylor hugged him when he said goodbye. I think it was the first time that she heard his voice. The elation of the small victories saves you from the pain. Victory and my love for him saves me every day.

Monday, October 15, 2007

Colin Farrell interview

His son suffers from a rare form of CP - he gave this really touching interview to a British media outlet.

Combating Autism Act Appropriations

For those interested in the appropriations part of the Combating Autism Act. I hope these appropriations will be supported as they have the potential to benefit kids like my son.


October 1X, 2007

Dear Chairman Obey and Ranking Member Walsh:

On behalf of the estimated 1.77 million American families affected by autism spectrum disorders (ASD, hereafter referred to as autism), we thank you for your leadership in including $16.5 million at the CDC for autism activities in H.R. 3043, the 2008 Labor, Health and Human Services, Education and Related Agencies Appropriations Bill, and respectfully request that you provide at least the House level for autism activities at the CDC and support at least the Senate level of $37 million in HRSA, for autism activities in the Conference Report on the Fiscal 2008 Labor, Health and Human Services, Education and Related Agencies Appropriations Bill. In addition, we respectfully request that the House conferees agree to the Senate level of $1 million within the Office of the Secretary of Health and Human Services for administration of the Inter-Agency Autism Coordinating Committee.

As you may know, it is estimated that 1 in 150 children in this country has autism or another Autism Spectrum Disorder (ASD), making it more common than pediatric cancer, diabetes, and AIDS combined. The condition has truly become an epidemic, yet federal funding for autism research is less than that for much less prevalent diseases.
Last year, Congress very appropriately responded to this crisis by enacting the Combating Autism Act (CAA). For Fiscal 2008, the CAA authorizes a total of $168 million for a variety of critical autism activities, including: (1) $16.5 million for the CDC to conduct its Developmental Disabilities Surveillance and Research program; (2) $37 million for the Secretary of Health and Human Services to carry out autism education, early detection, and Intervention programs; and (3) $114.5 million for the HHS Secretary and the NIH to form and operate an Interagency Autism Coordinating Committee, implement the expansion, intensification and coordination of research on ASD, and fund and review autism centers of excellence.

Both the House and Senate passed these authorizations, the House by voice vote and the Senate by Unanimous Consent. Again, we thank you for your support in the House-passed Labor, Health and Human Services Bill, H.R 3043.

We thank you for considering this most important request. If you have any questions or would like additional information, please contact Kenneth DeGraff in the office of Rep. Doyle at (5-2135), Tim Lynagh in the office of Rep. Chris Smith (5-3765), or Peter Kay in the office of Rep. Carolyn McCarthy (5-5516).

Sincerely,

Mike Doyle
Christopher H. Smith
Carolyn McCarthy

Sunday, October 14, 2007

Fall Festival Photos





Yesterday was an anticipated October event for us... the Manassas Park Fall Festival and Fire Station Open House. We go every year. It was Jimmy's first time on one of those inflatable slides. It was smaller than the ones he has seen before, but he did it. I hope he will make it down the shark slide at his brother's birthday. Jacob didn't want his photo taken, so he turned around mid-slide. The last photo was of Jacob learning how to use the fire hose. Once the fire chief taught him, we couldn't drag him away. He tried to nail me with it - fortunately, I moved quickly.

Saturday, October 13, 2007

Another visit from the Ear Infection Fairy

He is back on antibiotics. I am kicking myself, because I know they are part of what's wrong with him. I feel like a hamster on a wheel. He has been fighting us tooth and nail this time on the medication. We were losing the battle last night - until Dad got him to suck down the medication... as he slept. Whatever works.

Wednesday, October 10, 2007

Something I have been looking into...

There is much floating around about yeast and autism, that a yeast overgrowth, often a result of the overprescription of antibiotics causes many of its most severe symptoms. That would fit with Jimmy's onset and history perfectly. His regular developmental ped isn't a fan of the idea, so I am now looking for a doctor that would be willing to look into biomedical interventions like the ones listed below.

"There are many safe methods to treat yeast overgrowth, such as taking nutritional supplements which replenish the intestinal tract with 'good' microbes (e.g., acidophilus) and/or taking anti-fungal medications (e.g., Nystatin, Ketoconosal, Diflucan). It is also recommended that the person be placed on a special diet, low in sugar and other foods on which yeasts thrive. Interestingly, if the candida albicans is causing health and behavior problems, a person will often become quite ill for a few days after receiving a treatment to kill the excess yeast. The yeast is destroyed and the debris is circulated through the body until it is excreted. Thus, a person who displays negative behaviors soon after receiving treatment for candida albicans (the Herxheimer reaction) is likely to have a good prognosis.

Please note: treatment for candida albicans infrequently results in a cure for autism. However, if the person is suffering from this problem, his/her health and behavior should improve following the therapy."

I have no illusions, but I would be willing to try almost anything within reason. This, to me, is reasonable.

A more thorough report can be found at the Healing-Arts.org.

Monday, October 08, 2007

Hello Governor Kaine!

I say that because we had the great honor of meeting him. The only reason I don't have a picture is because the nice man who offered to take a picture hit the wrong button on my phone (if we meet again, Mr. Governor, I would like a second chance of getting a photo of you and Jimmy together!)

So, when we met, I asked you about the possibility of mandating coverage of therapeutic and habilitative services for children with autism and other developmental disabilities. You asked if other states provided coverage for these services and I rattled off California, New York, and Indiana. This document from Connecticut actually indicates that there are sixteen providing coverage in some form or fashion. I personally am a big fan of Indiana's language as stated in this document:

"Indiana. Policies must include coverage for pervasive developmental disorders, including autism. Coverage may not be subject to dollar limits, deductibles, copayments, or coinsurance provisions that are less favorable to an insured than those that apply to physical illness. Insurers and HMOs cannot deny or refuse to issue coverage on, refuse to contract with, refuse to renew or reissue, or otherwise terminate or restrict coverage on an individual because of a pervasive developmental disorder diagnosis (Ind. Code §§ 27-13-7-14. 7 and 27-8-14. 2-1 through 27-8-14. 2-5)."

Pennsylvania has been considering legislation there, which the governor there endorses.

Currently, insurers in Virginia are not required to covered the needed habilitative services for autistic children, including but not limited to speech therapy, physical therapy, occupational therapy, and Applied Behavioral Analysis, a therapeutic approach that helps these kids achieve language, social skills, and appropriate behaviors so they can better integrate into social, school, and community settings.
Instead of covering these services, the health insurance companies are essentially passing these needs to the state and county governments. Early intervention programs and the public schools cannot meet the adequately meet the needs of this growing population of children with autism and other developmental disorders. When Jimmy was diagnosed at the age of 4, 1 in 166 children was diagnosed with autism. A year later, it was 1 in 150. Now in boys alone (boys make up 75% of diagnosed cases), the number is 1 in 94.

Florida has been considering legislative activity on this matter. Their Austism Society has a talking points document that illustrates the importance of this coverage. In Florida, Medicaid covers these needs and private insurance does not.

"Parents who consistently provide therapeutic services, with after tax dollars, often risk bankruptcy or sometimes fraudulently divorce to qualify for Medicaid. In many cases this increases the financial burden on the State, since the State must also then provide care for siblings and indigent spouses.

Insurance companies and health maintenance organizations are in a much better position to negotiate lower rates and better quality service. Eventually, coverage costs will decrease as more professionals are trained to work with autism. Coverage will assume the cost of treatment at a lower rate.

The average cost of cumulative therapy for children with autism is approximately $20,000 per year and steadily decreases when recommended frequencies are administered consistently.

The targeted interventions are scientifically proven effective treatments for autism. They have the equivalent effect as a surgical procedure or medication treatments for other afflictions.

The estimated increased cost to insurance providers is approximately $4 million, considering recent State increases in waiver eligibility, which would be spread over all policyholders. This represents less than a meager 1/12th of 1% increase, which equates to less than 4 cents per $500."

Although early intervention is best, intensive services (which reduce overtime as kids improve) can begin at any age and dramatically improve the quality of life for children with autism. From that same Florida document:

"Children who go without the essential treatment may never have the ability to master basic life skills and they may become a danger to themselves and to the community. For every $1 we spend before the age of 5 we save $7 on lifelong care."

Schools have a role in educating these kids. The state may have a role in helping with needs like respite (needed, since the divorce rate in families with autistic children hovers around 85%.) Medical insurers have a role too - they should made to share in the responsibilty for therapuetic interventions that this medical diagnosis requires to allow them improve and live a full and meaningful. That is what I want for my son Jimmy. It's what any mother wants.

I know you thought he was cute and he is. That is my baby. He's six, but he is my baby. I love him with every fiber of my being. As difficult as this has been, I don't think I could change a thing. My life is richer for having him in it. Although I wish he could be like everyone else, I thank God everyday for him. I hope you have an opportunity to meet him again. He's a lot of fun.

Sir, not to be over the top, but it was really an honor to meet you today. I look forward to hearing from your staff soon.

Many thanks,
Rachel Kirkland


And thanks to everyone else that I met there. From the bottom of my heart, thank you E.J. Scott for the invitation and to Ernie Porta for dragging me up there, pushing me past the State Police detail, and introducing me to Governor Kaine. I appreciate it greatly.

Thursday, October 04, 2007

Happiness is...

... not having to explain why your son lay down in the middle of the floor in McDonald's. As you are trying to place you order. And he is chirping like a dolphin. Thank God the guy in front of me looked at me sympathetically and said he had a special needs child. I find reassurance in moments like that.

One of my old friend/co-worker's dad...

...made the playoffs. I am torn because I like the Rockies, but I can't root against Charlie Manuel. His daughter took my job after I left it to go to my current employer.

Go Phillies!!!!

Monday, October 01, 2007

This election cycle...

Wow, I have had an interesting morning. I called a couple of the local campaigns regarding the whole autism issue. I talked to Chuck Colgan's (incumbent running for State Senate) campaign manager this morning and he is going to talk to him about autism and my concerns about health insurance, education, and respite funding via the waivers. I should hear back from him shortly. I also called Jeanette Rishell's office this morning and should get a call back from her as well - she is running for the House of Delegates. I need to try to get ahold of someone at Jackson Miller's campaign, though he and I have talked about this issue before.

What really amazed me was Bob FitzSimmond, who is running against Colgan. I spent 42 minutes talking to him on the phone. He spent some time on the Community Services Board, so while he doesn't know as much about autism, he was very willing to listen and had a good many ideas. I was kind of impressed.

None of this should be construed as an endorsement, because I am not 100% who I am voting for yet - mostly because of the caliber of candidates. I thought that some of these people just didn't care, but I am impressed by how much they actually do.

I should really get a hobby though... this is what I am doing with my son's sick day. Maybe I will try to clean house or something. I have no life.

Thursday, September 27, 2007

Bus Update

As of Monday, Jimmy is back on the bus. They have new driver who will be picking him up at 7:57 a.m., with him arriving at school at about 8:15. It only took a month, but I am glad it is finally straightened out.

After all the grief I have given them, I bet they don't mess with his bus route next year. :-)

Wednesday, September 26, 2007

Jenny McCarthy is on Larry King Live

I am going to record it. I bought the book. She is a believer in mercury, which isn't something I necessarily subscribe to. She does GFCF, which I am seriously thinking about pursuing. It scares me because I don't know where to begin or what Jimmy would actually eat, but I am starting to think it is worth a try. I just caught him pooping in the bathroom sink.

Tuesday, September 25, 2007

Poop factory

Yes, we are back to playing in it. It's like he is fascinated by it. He even took off his pants and pooped in Buster's water. The bathtub is popular as well. I don't get it. He sometimes get multiple baths a night to address the problem. I am upstairs with him right now for his second tonight. He pooped in the first one.

I am getting good reports from school however, as well as his therapy sessions. I guess to some degree home is better, but this whole poop thing does get me down.

I got my foot checked today. I pulled a tendon. Mercifully, it doesn't require a cast. I have special inserts for my shoes however for the next several weeks. I can also go back to the gym, though I am limited to low impact like the bike and the elliptical. But at least I can go. I hope to end this cycle of getting injured handling Jimmy.

Before I go, a hot stock tip - invest heavily in the company that puts out Clorox Wipes. I go through a ton.

Friday, September 21, 2007

My heart nearly stopped...

I dislike George Bush - here is another reason. He make a comment that was misunderstood, leaving everyone thinking my hero, Nelson Mandela, was dead. I know I am a dork for saying Mandela is my hero, but I think he is a beautiful, beautiful man who survived a great deal and never gave up, no matter how bleak the circumstance.

Thursday, September 20, 2007

Maybe I will buy her book...

I generally don't read autism books - it's not exactly leisure reading for me - but I just might pick hers up.

McCarthy calls Carrey 'autism whisperer'

Jenny McCarthy worried about finding a good man after her son, Evan, was diagnosed with autism two years ago. Then Jim Carrey came along. "Beyond doubt it was written in the stars that Jim and Evan were a pair," the 34-year-old actress tells People magazine in its Oct. 1 issue.

"He's actually helped Evan get past some obstacles I couldn't. I sometimes call him the autism whisperer. He speaks a language Evan understands, and Evan feels safe with him."

McCarthy and Carrey, 45, went public with their romance last year. Though she's in love, McCarthy has no plans to marry the twice-divorced actor.

"There will be no certificate," she says. "It goes far deeper than that. Jim came into our life with an open heart and open arms. He's learned a lot about autism. He listens. The power of listening. It can move mountains."

McCarthy and film director John Asher filed for divorce in August 2005, after six years of marriage. Earlier that year, Evan, now 5, was diagnosed with autism.

McCarthy, who starred on MTV's "Singled Out," details Evan's progress in her new book, "Louder Than Words: A Mother's Journey in Healing Autism."

She says Carrey was curious about Evan — in a good way. But she was nervous about introducing them.

"He was intrigued," she says. "He asked questions. Still, it took me about a few months to bring Evan over."

Tuesday, September 18, 2007

Okay, so I got behind again...

Jimmy is now being taken to school. After demanding a solution to the bus situation late last week, Jimmy rode the regular ed bus on Friday. It was a disaster. He wouldn't stay in his seat, he melted down completely, and he was pretty stimmy for the rest of the day. After that, the school system agreed to have someone meet Jimmy at 8:05 at the building. Yesterday went off without a hitch. Theoretically, they have an additional bus driver starting in October, so the drop offs aren't forever. It's just a shame that it took this long to get resolved.

Yesterday, we also had our FAPT team meeting. They are continuing consult and direct services for another 90 days. I am pleased about that. I also found out why our caseworker over at the Community Services Board hadn't responded to my e-mails regarding getting a psych eval for Jimmy so I can get him on the DD Medicaid Waivers waiting list. He left abruptly. Nice to know. At least now I have another contact to get going with that.

That's the brief version. I have finished with the last class I am going to take for a while, so I should have time to recommit myself to my blogging.

Friday, September 07, 2007

Today's pickup time...

8:26 a.m.. Not once did the school bus pick him up in a timely fashion. Jimmy was late to school every single day.

Thursday, September 06, 2007

City Districts Open with Few Problems (unless your kid is special ed)

The reporter who covers the local schools is great, but in this case, I think she has been misinformed. I have heard rumblings on the local autism listservs about school districts being short drivers - regular ed students are seemingly given some sort of priority in terms of students. Their routes are the first to be straightened out and their buses arrive on time. Special ed students, on the other hand, are the last priority for pick up and arrive to school late. Jimmy has not been picked up before 8:30 this week - the same time that the tardy bell rings at his school. I am furious - it's almost like he isn't given the same instructional time as other students because of his disability, that because of the serious nature and the need for him to ride a bus with an aide, the school system doesn't really care when he shows up. No one person has said that, but that is how I feel. It is my understanding that nothing will change for us until they hire another driver (they are down two now in Manassas Park.) Why should he lose out on his education because he rides a different bus?

I know the natural solution would be to have my husband drop him off. The kiss and ride isn't equipped for a child who does not separate well and can't walk to the door by himself. Moreover, most schools have a holding area for hundreds of students until the bell rings. Jimmy couldn't function there either. So Jimmy misses instructional time and my husband gets to be late to work everyday until this problem is solved. I wonder how long his boss will tolerate that.

Tuesday, September 04, 2007

I have jumped the shark..

I have a minivan... a Dodge Grand Caravan. 2007 - we got a great deal on it. I can separate the boys now and they sit far enough back that they can't kick my seat. I am not looking forward to the payments or the car tax, but this vehicle will see Jacob into middle school - as long as no one else hits me.

I am a minivan driving mom. I have joined a sorority of millions. Eeek. I'll try to post pics tomorrow.

Jimmy had his first day of school today. The teacher reported that they spent the day getting to know each other. Nothing else remarkable to say... except he read me a Mo Willem book. I turned the page and he read. It was so neat.

Saturday, September 01, 2007

Catching up...

I haven't blogged much this week, with the accident and work...

Last Sunday, my BFF T took me to the Indigo Girls. It was a great show and just fun to hang out with her. She only lives an hour away and I am embarrassed that I never seem to find the time to go and see her. Actually, going to her house is one of the few relaxing outings I can possibly make. She has three kids and has known Jimmy since the beginning, so I never have to explain. That means a lot to me. I respect her, her intellect, and her wit. Okay, maybe she is a little bit of a smart ass, but that's not a bad thing. Her youngest starts kindergarten on Tuesday. I can't believe so much time has passed...

We have started the car shopping process. I test drove two cars today. We are going to shop tomorrow while my mom is here to watch the boys and again on Monday if we have to. I hope to have the rental back by Tuesday, rolling into the new school year in a new ride.

I am such a sap...

I just watched a few minute of Titanic. You know, towards the end, as the boat was sinking. I couldn't bear to watch it. It's a movie, you know.

Thursday, August 30, 2007

Meeting this morning...

I am scheduled to meet Jimmy's new teacher this morning at an early meeting. The timing is horrible as I have so much going on at my school, especially trying to ready a new library for Tuesday. Hopefully it will be brief. I just want everyone to meet everyone else before the first day. I know he has already met the teacher and I have been told they interact well together. Right now, I am debating dragging him along to see for myself, but the reality is that I am trying to foster communication between the adults. Your non-verbal child is never going to tell me how is day is, so I need to feel like I am informed. I don't want another incident like the Rifton Chair.

Monday, August 27, 2007

Lots of stress...

I hate bad drivers, insurance companies, and car salesmen, in that order.

Jimmy had a huge meltdown tonight. I haven't even started the new medication with all of the added car drama, but I am concerned. He didn't want to be in our bedroom, didn't want to be his, cried for a good 40 minutes. I wish I understood what plagued him sometimes.

We have doctor's appointments Wednesday afternoon and I have a transition meeting with the new teachers and the therapist early Thursday morning for Jimmy. I had to ask for it, but it really should be standard. Yes, they have active construction going on and had to cancel "Meet the Teacher" night for parking concerns. But what parent in their right mind would send their non-verbal child to a teacher they have never met? I just can't.

Sunday, August 26, 2007

The death of my car...





It is with great sadness that I announce the death of my 2001 Ford Focus wagon. It was taken from us prematurely by a person who failed to slow for stopped traffic. This is the second time in a month that we have been rear ending in stopped traffic by someone who seemed to be talking on a cell phone at the time of impact. The first one was a $550 repair bill for a slow speed impact in Jim's car when we came back from Texas. This impact was not at a slow speed from what Jim told me. In this case, the driver was cited by Fairfax County Police. My car was pushed into the vehicle in front of it, so there is front and rear damage as well as airbag deployment. I think the bill from this will more than likely total me out. Jim and Jacob were on their way to meet Jim Sr. for a train show at the Dulles Expo. As you can tell from the photo, Jim was hurt - he has a burn from the airbag deployment as well as a sore back and neck. Jacob seems okay, but he is sore as well. He was scared crapless when the airbag deployed. Both went to the emergency room and both will be going to the doctor again this week. It could have been so much worse, though, but it makes me sick that they hurt and had to go through something like this.

Friday, August 24, 2007

Okay, okay

Yes, I am still alive. I have been overwhelmed with life and work, especially some things that are going on on-the-job. But I am still here.

We have a nice visit on the Hill with one of Congressman Wolf's LAs. She knew very little about autism, so for an hour I shared with her my experiences with Jimmy. We had to keep off the Mr. Wolf's desk, so eventually we let him watch TV. He had a very nice flat screen in his office, where Jimmy watched Sagwa and Barney. I asked her several questions about the Combating Autism Act and the money from it. I hope she tracks down an answer, those I know that the wheels on the Hill grind very slowly. It was gratifying to just get time with someone like that.



I couldn't get him not to squint, but at least he looked at the camera.

We have our rescheduled doctor's appointment today for Jimmy. I got a note in the mail confirming the appointment for Rockville. Since I was told that it was definitely Fairfax, I was concerned. So I called the doctor's office. She breathlessly called back to tell me that there was a glitch and that all of the doctor's patients were scheduled into Rockville by mistake and it was indeed Fairfax. I was the only person to pick up on it, so she had to now call all his patients to clarify. My good deed for the day. Apparently, however, Children's Hospital's office manager is Howdy Doody. I have not been in a single department there where the office wasn't a mess.

Wednesday, August 22, 2007

Watch this space...

I owe you a post. I have been so busy with life and work, I haven't gotten a chance to do it. I promise later tonight.

Thursday, August 16, 2007

More Sesame Place pics...


Dancing with SuperGrover...


What can I say... Jacob likes to boogie!!!

Zoe!!!!

We love Zoe!

An interesting article about IQ tests...

...and autistics. Of particular interest to me as I have to get Jimmy tested to get him on the list for DD Waivers.

Mr. Kirkland Goes to Washington

Jimmy and I are taking a little trip in the AM to Congressman Wolf's office to meet his new healthcare staffer and talk about autism. Pics tomorrow...

Wednesday, August 15, 2007

Mandy Moore covers Rihanna



I have a mild cover song obsession, so when I tripped across this, I couldn't resist...

Cookie Monster Gallery






Cookie Monster is worthy of his own post...

As I said in an earlier post, he has a Cookie Monster t-shirt. He still "talks" about it - meaning he smiles and says Cookie Monster repeatedly, so we talk about the day.

Thanks Matt.

A few Sesame Place photos!!!!



Jacob with Elmo...



Jacob using the ropes to pull himself up...



Hi from Elmo!



Jimmy (green swim trunks) sliding down...

Monday, August 13, 2007

This surprised me...

Autism Speaks picked up the article on Jimmy and the bathroom...

Wow!!!! Back home, back to work, back to the world...

First off, to finish up the vacation stories. When we returned to Sesame Place on Sunday, I went back to the Welcome Center to get Jimmy's wristband. When I arrived there, I gave the woman working the desk Jimmy's name. She told me she had seen my blog... she was Zoe's mom. We talked for a few minutes - now we know why her daughter was so wonderful and sweet! Clearly genetics! As souveniers, I bought a little stuffed Zoe of my office - I was really touched by the whole experience of meeting Heather (if you are reading, I would love to keep in touch!!!) and I got Jimmy a Cookie Monster shirt. He loves it. We had a wonderful day - we left about 2pm and swung out to Hershey to see Chocolate World. It had been our intention to go to the park for a few hours during their twilight prices, but it was really more than I could do. But the tour was fun!

We got back on Sunday, going to bed early because I had to get up at 5:30 a.m. to get on the road at 6:30 for a 9 a.m. appointment at Jimmy's specialist in Rockville. On a weekend, it's about an hour. I allowed two hours for the drive since it was a Monday morning. I arrived up there at 8... only to find out that the doctor had moved his vacation up a week and canceled my appointment. It would have been nice if they had called or left a message. I made it back to work by 9:30, but I am still steamed. The doctor is very good at what he does, but is not good with follow through with correspondence and so forth. But there aren't enough developmental pediatricians to go around - I have to stick with him because most aren't even taking new patients in D.C.

But that has been the only negative in the past several days. My first day back at work was great... I got a great deal of unpacking done today and will likely have a decent handle on the workroom and my office stuff by the end of tomorrow. I also won't have furniture until next week, but I am just going to roll with it and bring my laptop to work.

The photos are on the upstairs computer, so I will post those later.

Saturday, August 11, 2007

Day 2 of Sesame Place and a side trip to Chocolate World...

More on this tomorrow, as I have to get some overly excited boys down for the night. Suffices to say that today was amazing as well!!!

Friday, August 10, 2007

Greetings from Sesame Place... and special greetings to Zoe and Cookie



I will update with a ton of photos when I get home, but we are at Sesame Place, our last blast before I head back to school to ready the new library on Monday. We went all out this time, including the Dine With Me character lunch for the boys. They loved it, especially Jimmy. But that would be an understatement of what really happened...

The moment we walked in, Jimmy said "Cookie Monster" in his tiny little voice. We knew that we had to be sure that Jimmy got a minute with Cookie. The characters all floated around the room - it was a great experience. At times Jimmy found it a little overwhelming, but he really enjoyed his visits with Ernie and Zoe. Actually, Zoe hung out for a while. I always tell the characters about Jimmy - it often makes a difference in their approach to him - and Zoe took a lot of time. I was babbling on about him and Zoe pointed at me and then made muscles with her arms. "Your strong." I was so touched. So I told her about him and my other kids at my school and she actually pointed at herself, crossing her arms, and then point at me. "I love you." Eventually she said goodbye to the boys and moved on, but Zoe was just so sweet.

Jimmy told the character handler of Jimmy's desire to see Cookie Monster - he had to, because Cookie had been hanging out on the other side of the room. Right after he finished his song, he cruised over to our table. Up until this point, Jimmy greeted the characters warily at first. When Cookie Monster arrives, he smiled a bit. He was excited to see him. Cookie hung out for a few minutes too. We told him about Jimmy saying his name when he arrived, that Jimmy loved Cookie Monster on Sesame Street, even that the first time I realized Jimmy understood spoken language was when Jimmy laughed at one of Cookie Monsters jokes on the show.

It was such a great experience, I could not have imagined it getting any better. But it did. As we were walking over to the big play area to let them run around, three college aged kids were coming my direction. This very petite and pretty girl walked up to me and started with "You don't know me..." It was Zoe out of costume. She told me that I was amazing and just kind of told me what she was trying to express to me when we were at the event, when she couldn't talk. Then the guy with her spoke - he was Cookie Monster. He said was very touched that Jimmy was so pleased to see him. I am just sorry that Jimmy wasn't with me. He had gone ahead to the playground. I told them about the blog, so I am hoping they will visit. I don't think I told them enough how amazing they made our day.

Tuesday, August 07, 2007

Two pics of Jimmy that are sort of amazing...

We flew American Eagle from Nashville to National on a small jet. There were two seats on one side of the aisle and one on the other. It was a configuration that simply wasn't going to work for takeoff. Fortunately, there was an amazing compassionate family who let Jacob sit next to them during takeoff so I could focus on getting Jimmy settled. Actually, he did amazing well during take off... no meltdowns or anything. We were seated however in the back of the aircraft. The noise was so unbearable, he went half the flight with his fingers in his ears.

Eventually, Jacob rejoined us and sat in the single seat. Then I sat there as the boys played. Then Jacob moved back. On approach he started freaking because his ears were bothering him. He want to lie across my lap, so I had to move Jimmy to the single seat. What happened next brought tears to my eyes for the sheer normalcy of it.



He sat there, quietly. He looked out the window happily, watching the world go by beneath the wings.



He pulled the emergency card out and read it. It was cute. Then, when they made the annoucement that the seats had to go upright... he pressed the button to do just that. I think he understood what was being asked and he did it. It is so simple, yet completely blew me away.

I am so proud of my boy.

We are back...

After Jimmy's recovering and another day in the pool at my dad's, we are back from Texas. We made our arrival in dramatic fashion as our bags went to Dulles, we went to National, and then we were rear ended on 28 on our way home. Don't worry, we are all okay. Such drama for six days away. I hope our weekend trip away is less eventful.

So, since it's the middle of the night and I am tired, storytelling will be limited. Here are a few photos...





Jacob eating ice cream at Braum's on Sunday.



My dad's Braum's selection.



To my left...



and my right on the flight from DFW to Nashville on the way home...