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.

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.

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.

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.

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!

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.  

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.

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.

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.

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.

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.

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.

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.

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.

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.