New Medication

We started Jimmy on Zoloft for attention. There is one school of thought that suggests that autism in somehow tied into serotonin levels. Given the history of depression on my side of the family, I am willing to explore that possibility. I can't see any perceptable difference yet, but it is likely too soon. He did give me a kiss today when I picked him up. That's been a fairly recent development. I'll take affection from that boy anytime! He is such a sweetheart.

Potty Training, Part Deux

Well, Jimmy and I made a few trips to the potty this weekend. He never actually used it. Keeping a diaper on him was impossible due to the heat, so I let him go commando around the house. He peed on my leg - twice. He pooped too - one he picked it up and put it in the toilet. The other was loose, he didn't bother it and I wound up scrubbing the carpet.

We did have a nice family outing the local pool on Sunday. He enjoyed it. Jacob got a little freaked out about the slides and the streaming water. A good time was had by all.

Jimmy and Potty Training

***ARGH!!!!!***

Primal scream. It had to be done...

Parent Training

At last night's parent training, we worked on putting on sandals and pulling the pants up. Simplistic stuff, I know. But as we worked with him, I realized he is completely capable of doing this stuff. It goes back to the communication piece. Listening to the verbal prompts and following through. Never did I imagine the basic would be such a challenge.

Well, it looks like we will be getting some respite from the CSB... I don't know how much and I don't want to count on having it until it is in hand, but I am really optimistic.

Bummer

The job the local school system that I interviewed for (the high school) isn't up anymore. I am assuming it is because they filled it. I wanted it very badly - and not just for the five minute commute. I really wanted to work in my community and in the high school. It's a great building with some money to actually develop a collection, a diverse student body - everything I hoped to do. I had so hoped to get the job.

We had Jimmy's IEP yesterday - it's official. He is going to Cougar in the fall. For me, that is SOMETHING to be happy about.

Twenty Years

When I got home last night, Jim told me that my best friend from high school, Christine, had called and had left me a message: her mom died. She left her sister's cell phone number, so once I got the boys settled, I called. It was unexpected, appears to be a heart attack, they were on the way back home. I remember her mom very well and liked her a lot. Christine and her sister seem to be beating themselves up about it - I hope they can get past that. I love them both too much for that and I am just sort of wrapped up emotionally right now, feeling for them in their time of grief.

But the phone, as sad as it was, reminded me of the joy of long standing friendships, where no matter how far apart you are geographically or how long you go between phone calls and visits, the basics never change. The pain I feel right now for Christine is as real as it would have been twenty years ago if it happened when I lived close by. Just now, I want to get on a plane. I know it isn't practical, but I want to go and hug her. It is a privledge and a blessing to have someone with whom you share a twenty year friendship. I guess its one of the perks of getting older.

Christine, I am so sorry about your mom. She is in my thoughts and prayers, as are you, Michelle, and Lorelei. Friends are the family you choose for yourself. You and Michelle will always be my sisters and that baby is another niece. I love you all. R.I.P. Dottie. Thank you for your girls - they mean the world to me.

Monday Morning Hangover

...Not literally. I didn't drink, but man, I am too old. I am just beat from last night. And Christine hasn't even gotten out of the airport. She is flying standby and every last flight is full. I am waiting by the phone to go pick her up. And she has finals tomorrow. Lovely.

Oh, and I had the wrong day for the IEP meeting. It is tomorrow, not today. Now I don't know if the Matthew's Center people can come, I had to call Kindercare and reschedule. I am pulling my hair out.

The concert itself was great. Yet another wonderful evening of revisiting my adolescence.

More later, once I figure out what is going on with my trapped-in-the-airport niece...

Ready for the Weekend

After yesterday's rant, I just wanted to assure everyone I am alive and well. My sister can't make it up for Depeche Mode this weekend, so she is sending her daughter instead. So it will be the two of us and the BFF at Nissan Sunday night. On the schedule for Monday - Jimmy's IEP meeting! A two hour fun fest. I wish they had a cash bar at these things, but I think most parents do.

ARGH!!!!

So Manassas Park Social Services called back with half of what I expected - the Medicare application was denied. Not a huge deal, since I wasn't going for that. What I am trying to get are MR waivers and then get on the list for DD waivers for when he turns six. I need respite and some help so I can get stuff done around the house. It is falling apart around me. I should qualify for the urgent waivers too because I have an extensive history of depression and, for as much as I love both of them, I am completely overwhelmed and seriously depressed. I know that. I just don't want to go back on medication again and have the side effects, gain even more weight, blah, blah, blah - although I would be keeping good company by joining the ranks of the millions of women in American on anti-depressants. Long story short, I have to go through the Community Services Board, which I tried to get help from back in October, to no avail. I couldn't even get an intake person to return my call. Am I supposed to take a day off work and just show up? What responsible member of society can afford to do that?

What I don't get is why this has to be so hard? In the past two weeks, two women that I know have had their sons diagnosed. The number of children diagnosed every day grows and there is nothing out there to help us beyond the schools. It's insane. Is this good social policy? No. It isn't even Christian. I need help with my kid. This situation is more than I can handle alone. And there is nothing.

Working My Way Through

I have to head off to the reference desk in a minute. I forgot to put SEAC bylaws on my last list, so I am working on writing those during lunch. In the realm of real work, I have to find a student assistant for the summer as well. I am almost done with the presentation for Saturday as well. It's like I am now playing catch up for everything I let go during the semester. Things will slow down. I have to keep believe that.

Then again, I bring it on myself. I went to the Governing Board meeting last night to preach all things autism - funding, first responder training. I wound up talking to the head of Social Services. MR waivers would be a good thing right about now - I can't believe they make you wait until 6 for DD waivers. But I guess talking to her in person makes the trip worth while. At least I get to scratch that off the list.

My List of Things to Do

My list of things to do, in no particular order...

_X_ Send proposal for ABA to local public schools system (causing all sorts of headaches for my friend in special programs)
___ Work on autism display for special education table at school fair on Saturday
_X_ Update Resume
___ Find job in line with newly acquired degree
___ Take up hobby at Dr. Bill's suggestion - he is right, I will burn out if I don't figure out how to relax and have fun.
___ Get Jacob new sneakers (already outgrown Christmas pair)
___ Clean house (forever on the list)
___ Do laundry (ditto)
___ Go to Governing Board meeting to give headache to board (sorry)
___ Call Social Services to see if there are any funds for Jimmy (pipe dream)
___ Prepare for Monday IEP meeting
___ Pick out outfit for Depeche Mode concert on Sunday (I am a girl at heart, after all)
___ Send EDW note, thanking her for Mother's Day card and being wonderful friend
___ Hang out with boys (always bumped to top, often keeping me from getting anything else done.)

And I thought I would have nothing to do after grad school!

Follow Up to An Army of One Wrong Recruit

The Army, in its infinite wisdom, released him...

Graduation

If anyone needs a librarian, I am looking for a job! In addition to finishing with a 3.93 GPA, I also won one of the schools "top three" honors - the Outstanding Service Award. Jimmy wasn't interesting in walking, but he did stand at the top of the stairs and clap as I walked across the auditorium.

An Army of One Wrong Recruit

Some idiot who was trying to make his recruitment quota enlisted an 18 year old with moderate to severe autism. They enlisted him as a calvary scout, gave him a report date for boot camp, and everything. Insane.

What I Want

Last night, I got a phone call from a woman with a grown daughter who is autistic. She was older, so I wasn't entirely sure where she was going with the conversation. She downplayed the benefits of ABA, saying what amounted to "let your son be who is going to be."

That's what I am doing. I am fighting to give him every opportunity to be who is going to be. That doesn't mean I should give him over to autism. If I do that, I have failed him and society, who will then be forced to pick up the slack when he is an adult who cannot contribute to society by holding a job and paying taxes.

What I would like to see is a bill that requires medical insurance and HMOs to provide habilitative coverage as requested by physicians for all children with autism under the age of 18. This would include speech therapy, occupational therapy, and Applied Behavioral Analysis. I don't think for a minute that it would get rid of all my bills, but it would make it fair. If the doctor requests 15 hours a week of ABA, then insurance would pay for that with what ever co-pay or deductible coming from us.

A good model for this type of legislation is available at the link above or right here:

http://scautisminsurancebill.blogspot.com/

This blogger I believe is a mom and lawyer who wrote the bill in question in South Carolina. The press coverage she links to does a good job explaining why this coverage is so important. If the insurance companies aren't forced to step up, taxpayers will be supporting these children in the future.

Grinding Back to Normal

Life is getting back to normal... Okay, scratch that. Nothing has been normal since I have a) had children or b) started grad school. As I still decompress from last week, I beginning the rest of my life. That involves looking for a job. I have another interview tomorrow for a school librarian slot. I remain hopeful.

Certainly, the salary increase would be a big help, especially with Jimmy stuff and student loans. I would also use some of the increase to afford Jacob the opportunity to do Hooked on Phonics at daycare. They enrolled him by accident at daycare. He loved him, but I had to pull him out because we really can't afford it. That's just the worst feeling in the world, especially when we spend so much on Jimmy.

I will also go pick up Jimmy's newest prescription tomorrow. We also are going to reduce the amount of casein he ingests by introducing him to rice milk. We have opted not pursue the gluten free because we really don't know what he would eat if we eliminated that from his diet. I would have implemented the milk already, but Giant doesn't stock it. It looks like Trader Joe's will be our only source for that. I am so glad they put one in Centreville. I will be interested to see if there is any notable improvement of the stemming or his attention.

Manassas Journal-Messenger Article

Well, the article is up. Jim and both read it and we liked it. I figure that "never shuts up" quote about Jacob will follow me for life, but I know I said it. He is never quiet. I wasn't sure if I would regret doing this article or not. Right now, at this moment, I don't.

Thanks to Alex and Donnie for taking such time and care with us.

Goal

With a little help, Jimmy made his first goal in a soccer game. Okay, someone helped him move his leg, but he seemed pretty pleased with himself. Jimmy did kick the ball down the field twice on his own. I was most happy about that. Jacob cheered Jimmy on, yelling "Go, go Immy, go, go."

Jake's crashed out on the chair. If I could get Jimmy's to take a nap, I would catch some shut eye as well. I am tired today.

A Wish List

I took Jimmy to his follow up with his developmental pediatrician this afternoon. Jimmy is making progress, but still is most delayed in expressive and receptive language. The attention still isn't coming along as we would like, so we switched medication. He also is re-writing his recommendations for therapy to include physical therapy and 15 hours of ABA a week. At this point, we are up to 8, with 6 of those out of pocket. Kaiser will get a copy of the letter and I will ask his regular doctor to write requests for all of it. We will likely get PT through Kaiser, since they have their own, but I full expect them to kill speech therary and occupational therapy again. ABA is a non-starter, but I am going to ask anyway. Kaiser will say no. They always do. This time, I am going to fight.

I am going to fight for everything. How can a physician make recommendations for treatment and not have a single one followed through? The school has no obligation to incorporate the physicians recommendations for his medical care into his school. They are there to education him, not to provide therapeutic services. Except these ST, OT, and PT are fairly commonly provided in schools, just not to the degree that is needed for a child with Jimmy's disability. ABA, which is available in Fairfax, isn't available here as part of the curriculum for him. Maybe because autism is a gray area that impacts both health and learning - that has to be why the buck gets passed back and forth. It has to stop somewhere. Doesn't it?

In the meantime, I have the wish list. Everything that needs to be done to help Jimmy. Now I have to figure out how I can make those wishes real.

A Nice Note

Yesterday, I got a note from Jimmy's teacher in his backpack. Apparently the aide had been out sick and there was a nervous sub. At some point, he crawled in her lap, cuddled her, and said "Everything will be alright." My child, who never says a full sentence other than "I want ____" used a full sentence to show compassion to a sub. I think any parent is happy when their child shows empathy for another - it is a sign that you are raising a good person. To have Jimmy do it means so much more - he is able to show empathy, but that is because he knows that he is loved, that he has an emotional connection to myself and others. Jimmy is a blessing. He amazes me everyday.

I had a job interview today very close to home. The people seemed very nice and I think I would love the work. I am keeping my fingers crossed.

That's the latest - off to soccer...

The Election is Over

Well, the election is done and over. New members are heading towards the governing board. One I have met and I do like. The other two I don't know and I am reserving judgment on whether their election is a good or bad thing for the community. The people in my city said it pretty loud - they don't like high taxes. I hope that the reductions that we all would like to see does not come at the expense of children in the community, especially my son.

On a personal level, I am extremely sad to see Noreen Slater voted out. While she can't waive a wand and make the money fairy appear to help Jimmy, she has provided more support and encouragement than any other single person in this community in my pursuit of services for him. I am deeply grateful to her for her efforts.

I turned in my very last paper two and a half hours ago. Tonight I am going to pick up my boys and play with them and have absolutely nothing hanging over my head for the first time in three years. It's done and I am happy. I may have to do additional courses depending on where I am employed, but I will likely never HAVE to go back a do a degree the way I had to do this.

Shirt Over Head

The last of the revisions on the papers... it almost over.

Jimmy was really tired last night. He feel asleep before we could give him dinner. I was pouring Carnation Instant Breakfast down him to make sure he had something. His lack of interest in food scares me. He did wake up early with me, so I was able to give him breakfast. And he put his shirt on pretty much by himself. I only had to put it on top of his head, but he did the rest. There is something his brother can't seem to do yet!

Your Morning Update

Well, the school is continuing to fund us through the end of the school year for Jimmy's in-home stuff (the part that they pay for, at least.) It means that we are on our own for the summer months, which is difficult, but at least we can formulate a plan of action. Summer is when he needs the help the most, because he experiences sort of a general regression in what he learns. Most children experience that on extended breaks, but it is a little worse for Jimmy.

We have our appointment with Dr. Conlon this week. I am likely to revisit the medication issue then. There has got to be something other than Tenex to try. I will also enquire about the casein issue again. I am still afraid to do anything to Sir Skinny's diet, but I have heard from too many people about it having made a difference to not at least look at the milk. Soy is a transition, but I think we can do it. Going gluten free is the more daunting prospect!

I am six pages in to my last paper. I have to get it to Shari before I leave for revisions, so I should get back to it. More tomorrow.