Back again... at GMU

Updating from George Mason. I have a class on Wednesday nights now. I am currently sitting in the old reserves room, waiting for Jim to pick up Jimmy (I brought him to campus with me while Jacob is with Diana.) Jimmy is writing on the white board. When I get home, I will add the photo. He just drew a picture of an elephant and wrote "elepant" next to it. One of the student assistants drew a character with a speaking balloon and he wrote in "yes!" I am just blown away.

Things are going better. Jimmy sleeps at night now. We are still trying to get it right, however, as Jimmy got up at 5 a.m. this morning, cutting into my primping and cleaning time. I have to send his doctor an e-mail updating him on the sleep so he can phone in a prescription for the attention issues. But he is doing pretty well. Jim is more rested. I am more rested. Unfortunately, we all have colds, but there isn't much you can do about that this time of year.

Got behind again...

This new job kicks my butt. It really does, but I love it. I just can't believe that I went eight days without posting.

Now, the Jimmy update. He hasn't been sleeping. He stays up until 2:30, regardless of what time we put him down. He just goes until there is nothing left. Yet, we still get him up to go the school at 7:30. He doesn't nap. It's crazy. So, after a week and a half of trying to get a referral out of Kaiser, we have an appointment at Children's tomorrow. I got a sub, since they only time I could get an appointment was 12:00. I am hoping they can give him something to sleep, so we can get him on a real schedule and the 10 - 12 hours a night a child his age needs. It would also enable us to get some sleep - although, in fairness, Jim shoulders most of the burden as I am useless after 10pm.

I guess the upside these days is Jimmy is doing well at the afterschool program. I sent him for a few hours on Monday, since they do holidays at a different facility. Two first graders came over when I picked him up and said they were Jimmy's friends. I went home and cried. I never thought Jimmy might someday have peer friends - he is such an introvert - but I guess it could happen. I thought it would always be just us. Maybe there is hope there too.

How am I doing? Mentally, it's taking a toll. I am exhausted, anxious, and stressed out. I think I am starting to realize, finally, that this might be forever. Not that I am giving up hope on how far he can go, but recognizing the possibility that his life might be limited in scope. It's painful, in a way that most people can't imagine. I have aniexty attacks over my mortality, over him, over what might or might happen. I know I am not in control of this situation and his progress and it has turned into a horrible feeling in the pit of my stomach that I can't let go of...

With that said, I assure you I am trying. I am getting some help. I am taking care of my own health, physically and emotionally. I rejoined Weight Watchers and have lost five pounds. Someone at the meeting said about worrying how long it is going to take: "The time is going to pass anyway." They are right. I finally acknowledge that I have a responsibility to take of my kids, probably for a longer period of time than most parents. I won't be able to do that if I am obese and unhealty. I figure to be healthy, I need to lose 70 more pounds. I guess now is as good a time as any - the time is going come and go regardless.

Oh, and I turn 37 tomorrow. Lovely.

I can't believe I just posted my age on the internet.

Should I be worried?

Jim is on the bed, listening to "Strange Brew" by Cream. These kids are wacky - is it nature or nuture?

Jimmy Recovers... sort of...

He got over the flu, but he isn't sleeping well. His doctor from Children's called and scheduled him for Friday for an appointment - if Kaiser can produce a referral. I can't believe this is even a question, but it is. So I have to wait to request a sub until I know if Kaiser will come through. This sucks. And all I want is for him to get more than six hours of sleep a night. Six or seven is all he gets... He basically goes until he crashes at like 1 or 2 am, then we drag him out to go to school. Even on the weekends, we drag him out just to try to get him on some sort of schedule - and we fail miserably. Jim bears the brunt of this and is just fried because of it.

In good news, he is doing okay in the afterschool program. Our therapist had her first session with him at the school and she was pretty positive. It's a huge learning curve for these people, taking him on like that, but I deeply appreciate it. They'll never know how much.

I am off to bed. I should clean. My house is obscenely trashed, but I have no energy. I do have a three day weekend, so there is hope I will get something done.

I'll keep you posted about Jimmy.

Jimmy's Down for the Count

Has a virus. Will likely be staying home tomorrow. I am going to cuddle on him now and try to get him to drink something.

An Interview with Jacob

Yes, I am still behind... It's been a whirlwind of a week. I sat for the VCLA exam this morning. It's a professional assessment. I hope I did well - it was definitely easier than the GRE. No math. A good thing since I haven't seen the inside of a math classroom since 1987.

Jacob said he wanted to talk in this post. So here goes...

So, it's January 6th and 70 degrees out. Enjoying the weather?

Yeah.

Can today be attributed to global warming?

Yeah.

I know the ladies like you, but you have a special girl these days?

Yeah.

Who is she?

Shannon.

Going for the married women these days, I see. Do you think her husband will be jealous?

He's John.

Will John be jealous?

Yeah.

Jacob, why did you just dump the Ritz Bits on the floor?

Because I was putting them out.

Do you think you can put them away?

Yeah.

More with Jacob later, after he picks up the Ritz Bits.

Okay, Okay...

I have been busy. Back to school, back to work, back to daycare...

Jimmy started the afterschool program at Cougar. It's an adjustment for everyone, but I think especially the staff. I don't think they have had anyone quite like Jimmy before. I have been picking him up early this week, which makes no sense from a weather standpoint - if I want to go for a walk, you couldn't have a better week... I am afraid if they have too much Jimmy at once, they would head for the hills.

I started the whole narrative of our trip, but never finished it. I promise I will. Likely sometime Saturday. Saturday morning I have to sit for an exam for my provisional teachers license. I am suppose to meet my Mason friends for dinner at Wegman's on Saturday night. I thought the holiday bustle was over...

More later. I will post later tonight or tomorrow.

Still Getting Around to Posting

My niece came back from Texas to help with the boys, so I have been too busy to finish the quasi-saga of Christmas. But I do have some photos... The best burger chain in Texas is Braums - they also have fantastic ice cream. These pictures prove my husband's slavish devotion to it.

Our trip

Well, this is your longer post. We left our house at about 9 am Sunday for the day long odyssey that was getting to Texas. We went up to BWI with my mom so she could shuttle our car, since we had no idea which airport to which we would return. We pulled into the airport drop off and Jimmy threw up. The trip nearly ended there (since we were flying standby on passes, we had no investment in tickets or anything), but we pressed on. We were listed for a 1:30 flight, but waiting through 3 more to finally get on a 7pm flight. Since Jimmy was sick, he slept all afternoon. Jacob was a bear to deal with - we took turns (with Jim taking more than I) running him up and down the concourse, looking at planes.

We got on the plane and the world ended. Jimmy had a panic attack. We spent the minutes on the ground trying to figure out who best could hold him in his seat and who would get Jacob, since we had two seats three rows apart. I had to inform the entire flight crew that he was autistic, as well as the surrounding passengers, so there would be some level of understanding or empathy. The kindness of the people on our plane was pretty amazing, especially the flight crew. Once we pushed back, however, Jimmy was fascinated. He was pretty good the first half of the flight. Then Jimmy learned how to take off his seatbelt. Jim, who sat next to him, basically had to sit on him for the rest of the trip. But we made it.

Since Jimmy had slept all afternoon, we enlisted our niece Christine to come back to my dad's house to stay up with Jimmy, so we could get some sleep. Jimmy and Jacob were out within the first hour.

That takes us to Christmas Day, which we will be the next post as Jacob demands my attention.

Merry-Go-Round

Jacob on the carousel. We went to Grapevine Mills. Jimmy desperately didn't want him to ride it. He grabbed him and the waist and wouldn't let go. A longer post tomorrow.

A Shout Out

What up, E? Hope you are having a wonderful holiday in Hawaii!

Greetings from Texas

Well, after 8 hours at BWI trying to get a flight out, we are in Texas. Jimmy had a huge meltdown on the plane - for 15 minutes, from the time we boarded until the time we pushed back. He didn't want to stay belted, he was inconsolable, and I was sitting three row ahead with Jacob. Jim had to deal with it on his own. The flight attendants were amazing - helpful and supportive, running stuff back and forth between us for him, and running interference with the other passengers. I love American!!!!

More later. I will try to get some photos up, even though we left the camera.

I hope you had a Merry Christmas and we will be back for New Year's.

Okay...

I have been sick. What do you want? Big news though...

Jimmy got into the afterschool program at his school. I am thrilled. It's nearly $100 less a week in childcare expenses and it is less of a transition from home to school to daycare. Just home and school. It makes life more simple. Thank God for potty training. And he told me he loved me again.

I go on Christmas Break tomorrow. I promise more regular blogging from Texas... and new photos!

Neglecting my posting again

I have been busy... actually, I am home today for the second time in a week. Jacob is sick. I was sick on Monday (Jimmy was too...)

Jimmy is doing well. Apparently, he is singing a lot of Christmas carols at school, because that is all he is doing at home. We had Christmas parties this weekend (Friday and Saturday night) and we were able to get Shannon to sit both nights. Apparently Jimmy read "Green Eggs and Ham" to her visiting mother. He is doing a lot of drawing, a lot of writing (single words, out of the blue), and a little bit of talking. We are trying to get him to answer yes and no questions. He is so stuck on the structure of "I want" that it is proving to be difficult.

That's the brief update. More later.

A Done Deal

According to this and Senator Allen's office, it's done. The legislation had already passed the Senate, so it isn't going to be voted on again. Now, the president just has to sign it. I can't imagine he won't, though I will be relieved when the ink is on it.

ASA Applauds the House Passage of the Combating Autism Act
Wednesday, December 6, 2006

Legislation Provides Nearly $1 Billion in Additional Funding for Autism Research and Education

The Autism Society of America (ASA) commends the U.S. House of Representatives for its passage today of S. 843, the Combating Autism Act. This critical legislation authorizes nearly $1 billion through 2011 in federal funding for autism-related research, early detection and intervention.

“ASA applauds Chairman Joe Barton, Speaker Dennis Hastert, Majority Leader John Boehner, and our countless supporters in the House of Representatives for their work on the Combating Autism Act,” said Lee Grossman, ASA President and CEO. “We welcome the federal leadership on this national health crisis, and look forward to working together to effect dramatic change.”

S. 843, authored by Sens. Santorum and Dodd, first passed in the Senate on August 3, 2006. The legislation contains many important provisions to strengthen autism research and diagnostics, including a renewed investment to track the incidence and prevalence of autism spectrum disorder; to increase public awareness of early identification; promote the use of evidence-based interventions for those at higher risk for autism; and establish state-level clearinghouses for information on autism. For the first time, this legislation also calls for culturally competent information on autism.

“Autism has been neglected for far too long,” continued Grossman. “Thanks to the Combating Autism Act, federal agencies will have the resources they need to coordinate autism policy and to develop better diagnostics, treatments, and interventions.” ASA commends the hard work of its members and parents nationwide, who mobilized tens of thousands of emails, letters and press coverage to convince Congress of the importance of supporting this bill before convening.

In addition to the Combating Autism Act, ASA has partnered with many disability associations this year to ask Congress to support important legislation providing needed healthcare and respite services for the autism community. “This is only the beginning of our commitment to ensure that the federal funding is spent wisely and, in the most effective way,” said Jeff Sell, ASA Director of Chapters and Membership. ASA will work actively on the Hill in the 110th Congress to ensure further legislation for autism services and environmental health.

The Moment

Well, over Thanksgiving I had the moment I had waited for - my son telling me he loved me. So now, I have had the moment I have dreaded - he is in the sink getting cleaned off. He took a poop in the sink and was standing there, writing his name in poop on the mirror, singing "Santa Claus is Coming to Town." It was bound to happen.

Life is about the little moments.

Thank God!!!! Combating Autism Act passes the House!

"12:51 P.M. -
Mr. Ehlers moved to suspend the rules and pass the bill, as amended.

S. 843:
to amend the Public Health Service Act to combat autism through research, screening, intervention and education

Motion to reconsider laid on the table Agreed to without objection.
On motion to suspend the rules and pass the bill, as amended Agreed to by voice vote."


The votes should be there for it to get passed in the Senate, but I have made the calls to be certain I have done my part. It is a happy, happy day. I would like to thank the Honorable Frank Wolf and his staff, especially Lucy Norment, for their support of this bill and my son.

My hands are shaking.

Town Hall Meeting

Okay, so I went. My friend was willing to come help me with the kids couldn't get away, so I decided to go solo. Big mistake. I got there first thing, to ensure that I would get the first spot - get in, get out, get done. Unfortunately, Jacob was done before the meeting got started. We had waited for 40 minutes and he was just tearing around the place. I had Jimmy in the stroller and some sweet man restraining Jacob while I attempted to speak. It was overwhelming - fortunately, I had handouts.

The truth is my life is equal parts Heaven and Hell. I have a beautiful child who can't speak. I can take him out, but sometimes he gets overwhelmed by it. I can't really leave him with a babysitter because no 16 year old is equipped to deal with a child who likes to play in his own poo. I work and I raise both my sons, but every decision that I make is defined by Jimmy. It isn't a fair way to live sometimes.

I want him to have every opportunity to have a real life and make a small contribution in the world. That's why I go to these things, that's why I ask for help. He needs a chance. We need a chance. I never express well enough how much I love this child. The experience of raising him, as difficult as it is, is an incredible blessing. Of course, that's when my house is clean, I have enough sleep, and I am not scrubbing his poo of the wall.

Now, what to do about Jacob... He's a good boy most of the time. I apologize to those who were at the townhall tonight. I didn't have a choice but to bring him. Sorry.

Legislative Townhall Meeting

Why do I find out about these things at the last minute? Well, I now have more plans for tomorrow night.

A trip to the doctor

I took Jimmy to the doctor on Friday. His stools are very loose. They always have been, but it is to the point where it interfers with finishing potty training. His therapist mentioned yeast - he is prone to those yeasty rashes and his poo smells funny. Found out that our doctor isn't a big fan of the yeast theory, but asked us to switch to lactose-free milk and did a full panel of allergy and some gastrointestinal blood work. It took four people to hold him down to take six tubes of blood. I felt like the worst person on the planet. He didn't have an accident, so I believe he was trying to say the one thing he knew should let him escape - He screamed "I want pee pee on potty" the whole time. It would have been comical, if he wasn't so upset. We will see what it come back with.