Valium Inventor Dies

Now here's a man that made a lasting contribution towards society...

A New Toy Box

I went to the Child Study for Jimmy yesterday afternoon. They are evaluating him for (and likely recommending) Occupational Therapy and Physical Therapy (in addition to the Speech Therapy that he is currently receiving) for inclusion in his IEP. The timing was perfect, since the next IEP meeting is scheduled for December. I very much like the principals at the school, even though I still don't think much of the actual physical move to the elementary school. These people are trying - I only wish I had the money to do more. Kaiser, as we all know, does nothing.

After the meeting, I ran a few errands. I stopped at Toys R Us, where I bought Grandma Liz's early birthday present for Jake: a new toy box. I can now pick up all the toys off the living room floor, shut the lid and completely reclaim the space. It's great. He seems to like it too - they took about half the toys out of it and then Jake got in it to play with the ones that remained in the box. A fairly novel use for the box!

Survived BTS Night

It went pretty well. We were there for over an hour. I saw the other two kids in Jimmy's class, both Latino, which may explain why he was running around the living room this morning counting to ten in Spanish. The kids are very sweet.

I found out that the autism class that they were supposed to have at Cougar didn't happen. Jimmy might have to leave MP next year and go to a school in Prince William to get the education that he needs. That concerns me. They are also not doing the amount of ABA that I thought they would. His teacher says a colleague in Fairfax teaching in the PAC (Preschool Autism Class) says ABA makes these kids into little automatons. I don't necessarily want that, but I would love for him to be able to do more and be in a normal classroom and learn like everyone else. Maybe that can happen without ABA, but it seems to be the treatment of choice, the only one that has ever had any real documented results.

I am back to school this morning for a child study for occupational therapy. Then I think I am going to Coldstone for some ice cream therapy. I could use it about now.

Not Much to Report

Jimmy has completed his first week of medication. So far the only real effect I have noticed is that his sleeping more calmly. It's no longer like he is running a race while he is in bed. Beyond that, it remains to be seen. Starting this weekend, he gets a morning dose. Needless to say, I am curious about any chance with the added dose.

Tonight is back to school night for Jimmy's class, with our first look at the trailer. I am unsure if the class has moved into the trailer. I am a little annoyed with the school. They sent home all of this information and paperwork for the ECSE and Pre-K classes, yet all the content was geared towards the fourth and fifth grade classes, which have historically been the only grade levels at the school. I really wonder why these programs are such an afterthought to the administrators. Perhaps it is because they are marginalized populations to begin with. To be in Pre-K, it requires a need for services, whether it be special ed, part of the lower socio-economics levels in the community, or students for which English is a second language. At this point, I am very disappointed with apathy that I see being conveyed in the actions of the administrators in school district. Not to say that they haven't done a good many things right in the past, but I am not very happy with them at the moment.

Taking the Hobbits to Isengaurd

For all the Orlando Bloom fans out there... yeah, okay, he is sort of attractive.

Reasons Not to Hang Out for a Hurricane

A friend sent these pictures to me of what is supposed to be Katrina. I don't know anything of their origin, but the landscape isn't inconsistent with Mississippi. I would never wait around for anything that looked this spectacular.

Jake with Elmo and Jimmy and the doctor

Another from Sesame Place... Jake really loved seeing Elmo again. If it were just an hour and a few less toll booths closer, I would buy a season pass. It's a really fun theme park...

Jimmy's appointment - nothing really changed. He is hesitant to affix a permenent label to him, but autism would the one of his choice (as opposed to PDD-NOS.) In his case, it is more semantics rather than actual functioning level - cognitively high, poor social and communication. I still believe that it will improve with time and work. It's all still hard to deal with. I was in tears in front of the computer when I was in Dr. Bill's class Tuesday. Between that and my cable cutting out repeatedly, I have to listen to the playback because I got nothing from it one Tuesday.

The doctor did start him on Tenex. Although not FDA approved for this particular use, it is fairly commonly prescribed for impulse control and to a lesser degree hyperactivity. The underlying theory is if you have these things in check, focus will improve. We're only two days in now, so there is really no way to tell how it's going. The principle side effect is drowsiness and, well, he seems to be sleeping better.

It's been a looong week and I still have a day to go... And it's just the boys and me tomorrow night. Fun fun. Nah, I like hanging out with them... Just a little hard to go out with them.

The Day Has Come and Gone

I am too spent to really say anything right now. The appointment went well, but I need to breathe, so no report tonight. I am posting another photo (the boys and Grandma with Elmo) as well as the text of an e-mail I just received. What timing!

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. Thegondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean, Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.

By Emily Perl Kingsley

Sesame Place

Wow, I have been really remiss in posting. I will make up for it by offering a photo a day from our trip to Sesame Place yesterday.

We left the house at about 6:30 am. I make it to my mom's in Silver Spring about 7:10. We actually made it to the park at 10, right as it opened. Big Bird was one of the first characters we encountered.

I will post more about the trip tomorrow. I have been so swamped with school work, house work, work work, and trying to drag my fat butt to the gym that I have completely neglected this blog. I will be better this week, if for no other reason than I will likely have much more to say. I am going to the school board meeting tonight regarding Jimmy's program. We also have the BIG developmental pediatrics appointment this week. For those who haven't heard about this, this referral was given to me in early February of this year. September 20th was the first appointment I could get. I have easily filled out 25 pages of paperwork for it. This doctor will likely be the first to make some real recommendations for Jimmy and, as a result, there is a level of anxiety for tomorrow afternoon that I have never experienced before. Oh, and I have assignments due the next two days as well... I am completely stressed.

Never a Dull Moment

I went to bed last night at about 9:30. Just over an hour later, Jim yells for me. Jimmy has taken his diaper off and had an accident of the poopy variety. The antibiotics had given him diarrea. Apparently, he started cry, almost hysterically, and tried to clean it up himself before his dad got back upstairs to see what was wrong. We got him bathed, redressed, and he curled up next to me in bed for a while. I am spending today trying to get it out of the carpet. If you have any ideas, let me know.

Change in Plans

Jimmy has had an ear infection most of the week. We decided to postpone Sesame Place until next weekend. There is a silver lining - that's the weekend that Maria from the show will be appearing. Hopefully the weather will remain nice enough to wade in the pool or hit a waterslide.

Simply Beautiful

Read this post - it by a writer from NOLA's Times-Picayune...

Updating Life

So lots of stress lately. Jimmy is supposed to start school next week, but the building that he is supposed to be in still isn't completed. The head of special education is talking about tacking a half an hour on to his day to make up the time, which is unacceptable to me. It totally throws off his schedule at Kindercare and with the therapist. I have to send an e-mail to the head of special ed, the principal and the superintendent as soon as I am done with this post.

Grad school has started again. That is one of the few areas of my life that I always feel I have a handle on. Lots to do, especially since I am taking three classes this term. I was going to try to go to the gym on the days I have class, but I can't seem to do it. I run home, pick up the house, and make dinner before I go get the boys and come back for class. I am going to have to shoehorn the gym in on the other days. I have lost a little bit of weight, but it would be more if I was more diligent about the whole diet thing. I'll get there.

This weekend is pretty big - Momma and I (and probably the dh) are driving up to Philly to take the boys to Sesame Place again before the summer ends. I am very excited. When we were there last, we had so many great photos on our digital camera. The camera sadly went on the fritz and we lost them all. Hopefully Jacob will be just as excited to see Elmo again. I know it will be a long day, especially with Jake, who hates car rides, but I think it will be worth it. My mom will have a blast - I'm sure of that.

More later.

Words

So I wanted to look up this quote for something - I remembered a few words and that it was attributed to Nelson Mandela. I searched Google and found the quote. I also found out that Mandela didn't say it at all, that it came from a Marianne Williamson book. I don't think it makes the words any less true or beautiful, but somehow it bugs me still that it wasn't Mandela.

"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented and fabulous? Actually, who are you not to be? You are a child of God. Your playing small doesn't serve the world. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others."