can't comment

I haven't been able to comment on my blog, or anyone else's as well. Don't know if it's me, or if it's the site, but I tend to blame others so..... Damn this internet world.
I completed my 3 days of soli-medorol infusion. It's 1000 mg of steriod iv'd into you. This was done at home. Can you even believe it? A nurse came out to the house, put a port in my arm (which was FANTASTIC!) not one ounce of discomfort the whole time. He then taught Brent how to hook up the bags of IV and to flush the line 2x a day. Brent went at it like a pro. I can't believe it. I don't know if I would have been able to do it. I get all shaky etc.
I had no side effects with the exception of a bad taste when drinking liquids. We were able to go about our buisness all weekend long, and I even slept. I had read comments by others who had had the treatment and there were several bad experiences. I was prepared for the worst, but thankfully, didn't have it.
This morning I began a regimine of 20mg of prednisone for 90 days. This is alot, and due to my having active lesions. Why 1000 mg didn't effect me, but this pill has me doing jumping jacks I don't know. It's not too bad though. My doc said some people can tolerate it, others can't. If I find myself having a tough time, he'll take me off of it. I plan on giving 120% though.
That's me.
Then there's the real star of my show... Benjamin.
Ben's last day of school was yesterday. No more kindergarten..... whhaaahhh! Now I feel old. (Which I am!)
He'll go to day care, which I'm sure I've said in the past in nothing more then a holding pen for kids. Don't think he really gets very much out of it at all. There tends to be a turnover, and the help is not as trained as I would like. BUT..
Ben doesn't mind going. He does get out of the car happily which means the world to us. They do let him totally slack there, but summer is called vacation time.... right????
Ben will start his extended school year July 5th and take him throught the first week of August. Then it's just a few more weeks of slacking till we're right back in Sept again. Crazy how fast the time goes.
I've been seeing improvements in Ben daily. He has the best personallity. All of his aids at school and daycare tell me Ben's a favorite. When there's subs, or new people they gravitate to him. When he goes to his after school program the typical kids notice everything about him. And it's pretty much all postive. (At least that's what the steriods are telling me.... lol)
Thanks to all who sent well wishes. I can't tell you how much I appreciate it.
Any advise? Please feel free. I know we're all different... but... it helps!

so that's how it feels to be diagnosed...

I just was diagnosed with MS.
I swear I still can't believe it. I've decided the route for me to take is a factual business type road. I've read up on MS, treatments, prognosis's, etc.
None of these things make me freakin happy. Or devestate me either. Yes, you can have it both ways.
History: I felt numb on the left side of my body. From mid trunk down my leg. It was as if someone drew an invisable line around me. I work at a retirement community in HR. After conducting an interview for a C.N.A, I was talking to our Assistant Director of Nursing, and mentioned this oddity. I thought it may be a pinched nerve, or just that I was sitting wrong at my desk. Nothing to even begin worrying about. She on the other hand had STROKE going on in her mind. She didnt' voice that so not to scare me, but strongly suggested I call my Dr immediately. I did. The medical assistant who answered the phone declined to give me an appointment instead instructing me to go to the ER immediately. That's when he said it sounds like a stroke.
I went to the ER close to my home and was taken back immediately. Trust me, I was responsive, clear, functional, etc. The one thing that got me seen was as I was explaining the numbness, beneath my left eye became numb as well.
The ER doc decided to run the gamut of tests. CAT scans, MRI, X-Rays. After a bit of time, I did let them know I had to leave by 5:15 to pick up Ben from daycare. I left with a perscription for Percocet (I have no pain, but... what the hell!) and the suggestion to see an orthopedist for a suspected pinched nerve.
I was home with Ben for about a 1/2 hour when the ER doc called me to tell me the nueroligist had looked at my MRI and suspected MS. My reaction - Get the fuck out here. This does not happen to me or anyone I know. False alarm. Not worried. He wanted me to see a nueroligist right away. He's actually friends with my primary and had called him at home. He also got my docs' cell phone # for me to call first thing the next day.
Well..... I got to tell you, he was right. Is that what happened? no. but he was right.
My primary and I decided what's the big hurry? If I've had this, what's a few days going to matter. It does. but... live and learn.
I went to see my nueroligst. He's an old guy. Thinks he's funny too. He reviewed my MRI, tested my reflex's and decided I have MS. This news was delivered in a way I didnt' get. I thought he had given my a clean bill of health. When I asked him why he wanted me to get additional MRI's he said because you have MS. With a smile. My answer was "wait, what?"
Anyhoo.... I went lastweek, two different days, to get cervical and thorasic MRI's. as well as an updated Brain MRI with contrast. I had made an appt with my nuero for Wed, forgetting that I conduct trainings from 8:30-3:30. I called to reschedule. They gave me an appt for June 30th. That was cool with me. I had that appt for approx 20 minutes before the Dr's office was calling saying... a no... we need you in here. Sound silly? I then asked for a phone conference. Let's just get this over with. a no... you need to come in. Now I don't know about you, but at this point, I'm pretty sure this isn't going to be good.
Well I researched what I could, informed myself of the basics and felt pretty prepared. There are several types of MS. Some worse then others. I guess I'll eventually progress to those types, but for right now I have your basic MS.
My Doc told me I had developed new lesions in my brain since my original MRI three weeks ago. His exact words are "You're bad!" I said, "Oh, because I tried to postpone my appt?". His answer, and remember.... ALWAYS with a smile. "No. Did you read the results of your MRI? You're bad". Now again. I try to limit my profanity, but.... what the fuck! Is that your idea of bedside manner. Yet.... it works for me. I asked him something in a fog, and his answer was, "We'll fix it" well alrighty then.
The fix is tough. Starting tomorow, I'll have a one hour infusion for three days of high levels of steriods. A nurse will come out to the house, set me up, and then Sunday and Monday, they're expecting me to do it on my own. Great......
After that, I'll be on oral steriods for three months. Also, I've been perscribed an injectible med for the rest of my life. The cost is over 45,000 per year so my husband damn well better keep his job with his great benefits! otherwise... screwed.
I went on the web to research the med. There weren't any negative comments with the exception of the price. The usual side effects are site irritation. When you inject it hurts/stings for 5-15 minutes, and after a while it will leave indentations in your injection site. I'm 44, and have officially given up my bikini bod. That part I'll live with.
So.... MS, daily injectibles, unsure future.....
What else you got for me?

Beautiful!

I am a cheap mom! I'm no longer ashamed of this, and have come full circle from throwing the money around (which we never had), to not going anywhere unless we have a coupon.
So...
With Ben being autistic, there are tons of opportunities to do things. Carnivals, the zoo, the movies One is going to the Discovery Museum 4x a year on selected Sunday nights for an open arms evening. They are great. You never have to worry about explaining your child, and if he steals the ball from another kid, the parents know you're on it.
Ben enjoyed a new activity this go around. Rock climbing. He had tried it with no success the last time we were there, but this time... a regular mountain goat. His limited ability at communication be damned, he let us know he was proud. He stood up on these faux rocks stating... beautiful. great, good job. All of which I was to repeat with fervor! And I was happy to do it! He really is a funny kid.
We bought him new sneakers a couple of weeks ago. I tell him how fast he runs and how high he jumps with his new shoes. He's constantly looking at them when he runs and impressing himself. Too Damn Cute!!!!
Tomorow is field day at Bens school. I will be there from 9-3 assisting Ben through obstacle courses, and god only knows what. I hope I don't get too competative... lol Of course the whole time I expect Ben to be obbsessing on we'll get McDonalds after. Anytime we do ANYTHING, he thinks McDonalds will follow. Does that make me a bad mom? I just can't so no to that squishy face of his.... I cook most of the week... wahhhh. oh well.

how do I explain this?

I had a co-worker ask me about Ben Monday. She wanted to know details. Can he talk, is he loving, what's his school like?
She was asking expecting me to explain Ben, and then she could understand autism. She doesn't know anyone with it or who has an autistic child. I told her about Ben, and then explained, she still doesn't know autism. It's so funny to think, if a child has diabetes and is in the middle of an episode, give them orange juice. A child with autism having an episode??? who knows? all children with autism are so different. There really is no blanket answers. In Ben's class, there is 5 very individual children. In the gym class, 4 completely different kids. I'm not just talking personalities, but abilities, behaviors, everything.
We go to the Dr and look for some answers, but seriously? What's there to say? What works for Ben could be completely traumatizing to another child with autism. Unless the Dr lives with us, instead of seeing him twice a year for 1/2 and hour, what do they have to offer? We go to Phildelphia's Children's hospital. I don't know why. I keep asking my husband. We had to wait over a year for the appt. and they really haven't offered us much. Ben doesn't need meds (Thank God!) He sleeps for us, he's not aggressive, just a happy little guy.
What are we hoping for? I really don't know.
What do we expect? I have no idea
How do you explain your child, and autism to someone else, when you really don't quite get it yourself?

What's wrong with you!?

Ben has a thing..... We all do, but Ben's can be annoying. Lately he's enjoying flushing things down the toilet. This isn't exactly a new thing. He had a spin at it about a year ago. We replaced the toilet, bought a lock (much to my mother and grandmothers chargin) and eventually "it" went away.
Ben became much better at using the potty on his own (provided the light was on) and we didn't want to impede this. The lock went away.
Well, each day when Ben comes home from school, his first words are... "I'd like to take a shower please." Strips himself down to his socks, and heads on in.
This week, we've lost two bars of soap to flushing. I talk very seriously to him... No Flushing!
Well.... he got me. I heard a "disturbance" in the bathroom, and caught him flashing thru the bathroom to throw in my hair conditioner and a wash rag. Damn! I run like the wind and dive with both hands into the toilet. Sweet! Now I need a shower.... At that point, I could see something had made it's way down. Ben runs to the bedroom and starts asking to watch his Barney movie. I stand in the doorway with my hands on my hips and yell "What is wrong with you?". Takes me about 6.5 seconds to recall exactly what that is, and I snort at myself. The thing is... and I must know... Does he realize he's misbehaving, and if so, does he realize that there are consequenses? Does autism give you a free ride? What are appropriate punishments? What are the expectations I should have? Is the sheer delight of watching miscellanious items circle the bowl supercede the constant reminders of "don't flush your friends"? I must know, because if given the go ahead, I will ........oh I'll think of something.....
My husband and I are not on speaking terms. He gets home, and I let him know about the "incident". Dumb ass goes in and flushes. HA! I hear him heading downstairs for the wet vac. Comes up stairs, get the toilet water up. Yells out "Where's my tools" You mean the ones you've left in the den for the last 5 months? I drug them downstairs over the weekend in preperation for company. You know you're f*n family. Goes back downstairs with a "think your funny..." To be honest, at that point, I was enjoying myself. Then he takes the toilet off (2x in the last month) and tries getting the object out. After 1/2 hour he gives up and buys a new toilet. Frankly, for 85 bucks, I would have rather seen him try a little harder. Quitter.
Now... I do get that some may think, perhaps, that I should be watching him in the shower to prevent these incidents. Well.... that may be. Thing is, this is the time I've been using to get dinner ready. and I do check frequently. When I'm checking, he's sitting in the shower, soaping himslef up, or playing with his pirate ship... he's a sneaky little turd.
Yesterday during his shower, I put the trash can and plunger on top of the toilet seat figuring if he tries to get in, I'd have a heads up. I went to check on him and he's a stealth sucker. He was flushing as I opened the door. Don't know what or if it was, but as of today.. we can still flush.

Giving Thanks

A lot of the blogs I read are written by religious women. I'm not, and it wasn't planned, it just happened. One of the blogs has weekly been giving thanks for things in her life. I decided, let me do the same. Think of 10 things that are good with my life, when so often I only see the dark side. 1. Ben's belly laughs - they're contagious 2. My mother - always on my side, and has learned when it's better to say nothing. 3. My own sense of humor - for some reason, I make myself laugh 4. Quit smoking - it's been three weeks, and I'm feeling pretty good about it 5. Fletcher - Our Golden Retriever. The village idiot, but still good for a laugh. 6. My job - How nice is it, to go to a job and not mind, even get some enjoyment out of it. 7. Spring - My commute to work is picturesque. Spring is utterly gorgous in my neck of the woods. 8. Ben's improvements - Ben is getting better at letting me know what it is he wants. He's even getting a sense of humor himself, and it's been great to be able to share it with him. 9. Food and Shelter - some take it for granted, others may say I've earned it. I don't want to take it for granted though. 10. Living in a country where I can feel safe. You look at the news, listen to the radio, and wonder how people live from one day to the next. We don't know how fortunate we are.

IEP's a sure sign of spring

If you read any other autism blogs, it seems obvious that spring begets flowers, showers, and IEP's. Today was Bens. These teachers are crafty!!! They start off raving about how cute and sweet your child is, and BAM... you're sucked in. Just kidding. They all did say it, but of course I know it's true, so I could not blame them. Ben is doing well. He's opening up more and more each day. They see it at school, and we see it at home. Ben is a very with it kid. You hear of many autistic children who appear to be in their own world. Ben if very much in the here and now. Even when it appears he's paying you no mind, don't kid yourself. Whisper Chucky Cheese, and you'll know! The goals for next year are pretty high. They're looking for him to be able to have age appropriate converstaion.....hmmm..... well, I guess that's our goal, so let's have at it. He'll be writing his first and last name (capital's). I will supply dunkin donuts for a year if this goal is reached. I'll be so proud, I'll pop. Asking the "w" questions. I know they're the hardest, so I asked which one they were starting with. What. Can I get a vowel? I then asked "Can you give me an example of a what question" duh... All in all it was a positive meeting. On another note..... We get to the school, and we're sitting on a bench outside of the principal's office. Down the hall comes a woman (aide) with a child who is on the spectrum. (Gaydar has nothing on us parents) The child looks happy (around 7) next thing, he tries to jerk away (much like Ben will do when he gets something in his mind) from "this woman" She jerks his arm, and starts saying in a nasty voice "you're not getting water. What? you want a reward for trying to get away!?" "you'll need to earn your reward" And at that point he's crying. Are you %&*#$ kidding me? After our meeting, I ask to speak to the psycologist in the hall. I told her what had happened, and if this had been my child, she probably wouldn't realize how unhappy I would have been. That Ben would have jerked if he had wanted something... hello!!! Autism.... not great at communicating their needs.... It was a situation that sits on a border. Was there abuse.... I can't pin it.... She jerked his arm, but not enough to hurt him physically. She spoke in what I would consider a intimidating voice, but didn't threaten him.....but there also wasn't that environment of caring, making a child feel loved....I hate people. I work in a retirement community, and an assited living facility very close by just had a horrible case of abuse yesterday. People need to stand up and say something when something looks wrong. There are 4 people who are going to be arrested for abusing a 78 yr old woman with alzheimers. Did no one see what was going on? People! Speak up! That could be your child or grandmother.