Doctor

Another hope tomorrow.

Another Doctor tomorrow.

This one ASKED to see him. This one may see something challenging, we like people who are challenged, they try to help, they can become obsessed, they can find answers. But they can also throw their hands up if the challenge is too great, if it makes them look bad. And Doctors are the worst at this. I make no apologies, I have been to far too many waiting rooms and Doctors to know the exceptions are few and far between. Still, I have *some* hope but mostly I have a list. A list of tests I want performed or a valid explanation why they are not required. And I have a Merck paper too...and I almost understand all of it. Merck, gave me more direction, and more questions and more possibilities for diagnosis. I have almost ALL of his medical records, I have his CAT scan and EEG on disc. I am prepared.

This Doctor, better show me what makes him different than all the rest, he will prove to me that he is the smartest Doctor I have encountered and the aggressive one that wants to do everything immediately to find the cause or...I will find someone else. I do not believe in trusting any Doctor without question, after all, someone had to finish at the bottom of the class. I have been known to ask how many times the Doctor took O Chem. It's a crappy thing to do, but if they tell me: Oh it was easy...I have a tendency to think they lie. O Chem takes work, and all the GREAT Doctors I know admit it. Sure, some of them passed it the first time, but they ALWAYS comment on it being their toughest class. Those Doctors, I keep. As long as they can tolerate me being a partner in the medical care they are providing. If I ask a question, I want an answer, not 'a look'. K, done with that.

This week has been good for Bug. He had a development day. A development day is a day where he sleeps almost a full 24 hours. The next few days after will be interesting. His seizure pattern will change, his personality will alter. He has one of these a year, at least, sometimes more. The curious thing is his seizures happen exclusively while he is asleep, and he had none. He slept for hours, and would wake up, cuddle a little, run into the other room and then cover his eyes and go back to sleep. No seizures.

Tonight could be night number 6 with no seizure. If he sleeps well and has none, it is a new year record. He has only gone this long one other time in the last year and 4 months. Did I just jinx it? I hope not, but still, he is a happy little guy now. REALLY happy, annoyingly happy and very Mommy oriented.

Because of all the Mommy time he desires, Taylor desires even more. She has been reverting to acting like a baby to get attention, and if I don't validate that, she just gets mean. The girl KNOWS how to push my buttons, and to make messes and to apologize and to bite. She bit her brother, and I punished her, She didn't like it, I didn't like, but I DO NOT abide biters. In any way, for any reason. Now she REALLY knows it.

She also asks the same question with every Doctor visit: Will buddy talk? She wants to hear him talk as much as Glenn and I do, maybe more, because we understand that he may never talk, she thinks it's just about finding the right Doctor or Teacher. I wish I still felt that way, but...I don't. My hope dwindles with every week that goes by. Every medication step up and seizure that has followed. It's hard to see that this may be working now, hard to see it when all I have seen is the failure time and again. The regression. It has taken on a life of its own, become this thing that I can try to chip away at, but looms ahead of me all the same, never getting smaller, never giving any part of him back to me. I have fought a lot more than most in my lifetime, but the battle was always mine, this one is his and I have no way to give him my strength except to be his advocate...to learn as much as his Doctors know about what is going on in his body. To give them all the details they need to put this puzzle together as much as it can.

Idiopathic to me, is really saying: Don't want to look anymore. Idiopathic will not be tolerated. Poor, poor Doctor. He has no idea how much this means to me. God help him help Bug.

Bug's First Day of School!

Leading up to the big day was all sorts of emails, and research and nervousness. I followed him around, I cuddled with him, made sure all his medication was set and then he got on The Bus monday morning and headed off to start a new adventure.

Monday, Glenn had to fly to San Francisco so we were up at 6:00AM. I THOUGHT Bug's bus arrived at 7:07 so I got him up as well. When I verified, it was 9:07. Crap. Oh well, so off I went to take Glenn the airport and man, it was snowing pretty darn well. Yippee!!! We had repaired the brakes on the Land Cruiser so the ride was not as scary as it would have been in the Highlander. I got back, Mom had fed Bug, who had refused to eat earlier, and I made sure all his 'stuff' was ready to go.

Snacks? Check (and a lot of them)

Water bottle? Check

Diapers? Check - 5 times check

Unaware, beautiful child? Check

And I got a phone call. It was Charlie. Joan was not driving that morning and they weren't sure where the church was. He asked if we could meet at Cabella's. Why sure!

Cabella's? Check!

Deer + Headlight = Bug

We waited for a few minutes, and I took a few picts, trying to distract myself so I didn't cry too much. It was then, I realized my Sony Camera had a broken LCD. Darn it, but the guts still worked and the pictures are cute, as are most pictures of Bug.

When those Bus (ya The Short Bus god bless) doors opened there were these two smiling Grandpas! I was thrilled! The Bus Driver (notice the caps - yep intentional) looked like Dad! Bug was a little taken aback and then climbed up and took his seat. Charlie put his seatbelt on and I said my goodbye, talked to his new Grandpas and watched them leave.

Because I had been sick, I was not able to get him registered so I followed

The Bus

them to his school. I say that matter of factly, but I had to call Jen to talk me down I was so close to crying. In my head, I knew this was the best thing for him, in my heart, I saw him trying and trying and not being able to do what he wanted. And Jen reminded me that this was not about ME, it was about HIM and this is how he develops, and how he will learn to cope in the world. It would be silly to see a High School student walking in with his Mommy. She was right, of course, and I tried to calm down and think of all the things that are now available to him, and of all the people trained to help him. I never went to school to learn these things, his care was just dropped in my lap one day. I am not the one that will do the best by him at this point in time. I am the one that will help him succeed, but he has to get the tools to succeed from people better suited to teach him in the manner that he can learn. And yes, all these things went through my head as I was driving. Luckily, I had a big target to follow without thinking about the silly rules of the road.

 

Mount Mahogany

When I got there, Bug was walked off the bus, hand in hand, and taken inside. I went to his classroom, passing by all the screaming children gathered for a school assembly and thought: Uh Oh. I got to his classroom and his WONDERFUL teacher, Bre, had him by the hand. When I first saw Bre my thought was: YEA, she's tall and looks sturdy. :) Stupid thing to think, since she is so much more than that. But, realistically, with a strong boy that doesn't communicate, strong people taking care of him are a neccessity. So, I apologize for relagating my first meeting with Bre to such a shallow thing, but it is of the utmost importance. I said my hello's and told her: He's strong, and as much as love him, I know what it takes to keep him under control, use whatever means you deem neccessary. :)

And with that, I left him. Bre walked Glenn to the assembly and I walked to the Office.

I filled out all the forms and talked about lunch and other things and then I went back to his classroom to see how everyone was holding up and give Bre back the papers I had filled out for her. When I walked in, I was thrilled to see him standing in line with the other kids, coat on, hand being held, ready to go outside to play! Oh boy, was I thrilled! He didn't see me, which was good, because earlier he had reached for me and was a little upset I didn't take his hand. It was then, I knew I couldn't stay. I had planned on it, but it was not the best thing for him or for his evaluation. So, I said my goodbyes, assured Bre that if she needed me, I was at her disposal and I walked out the doors. I didn't really really want to, but I had to. I felt like I was abandoning him, even though I KNOW I wasn't. I got in the car and headed home. It was quiet. There was no coat hanger spinning hitting the back of my seat. His seat was empty. No little feet kicking, no little giggling behind me, just complete quiet.

Tay went to school, Mom and I went shopping for Dad's Birthday present, we picked up Tay, I signed up for her Parent Teacher Conference on Wednesday (no joke - preschool parent-teacher) and then I rushed to try to beat the Bus to get Bug. As we got to the school, his bus drove passed. Snap. But I parked and went in to talk to Bre, knowing I had some time.

The first thing Bre said to me? He is not truly Autistic. I shook my head, yep, I know. And he can't do a 6 hour day. Yep, I know that too. :) We went through what the next steps will be, she had two district personnel visit him and evaluate him. Bre created his IEP and we will be detailing it tonight. I thanked Bre and Camille for everything, got his pants and shirt from their dryer (LOL) and rushed back to meet The Bus.

When those Bus doors opened, there were still two smiling Grandpas and one smiling redhead! And the

Getting off The Bus

unmistakable odor of stinky boy (which I can't imagine the Grandpa's smelled because they WERE still smiling). I talked with them for a bit., thanked them profusely, asked how Bug had been and then made arrangements for the next day. Then we drove to Ogden for Dad's birthday.

I can't help but feel like all the things we have done in the last year have led up to that moment, the very moment that I handed my son over to his Bus Grandpa's and watched them treat him like their own. All these wonderful people in his life right now, are exactly as it was supposed to be. But, I have to feel that way don't I? I have to or I will feel hopeless, and it may be, but I doubt it. I doubt it very highly. Bug's first day of school is over and everything else begins.

 

The big let down

We're sick. Thanks Tay, we are all very sick. And because we are, Bug can not go to school. Sucks. He needs to get into school. but it will have to wait until he is better so he can come home sick again in a week because he is now around a lot of new kids and people that carry bacteria and viruses we have not built up an immunity against. There ya go, one of the longest sentences I have written but I am upset he will not be getting on the bus in the morning. And yet, I am glad to have him one more day. It will be a shock for them at his school, to have a seemingly perfect child that really has NO IDEA how to communicate. Aside from hugs an kisses and tugging...he doesn't really even try to get his point across. I PRAY they have had someone like him before, but I fear, it will be a learning experience for them and a frustration for him. I hope I am wrong. God help me if I am right.