The Evil That Is Living In Our House

I think we need to get our house exorcised - I am so tired of sick kids. Shane finally got on the right meds and he is on the road to recovery. Now Kassidy is sick again, coughing and (as her brother said this morning) hurling. No fever though. I know one thing for sure: this is the first and last time they get flu shots. I will take my chances with the flu!

In Others Words

Following post "borrowed" from http://adiaryofamom.wordpress.com/2011/01/:


I’ve been reminded an awful lot lately that autism is a developmental disorder. Yes, we all know that, but we know it as one blurry word, don’t we? Autismisadevelopmentaldisorder. Sometimes we miss the most important part. Autism is a developmental DIS-order. Development happens IN A DIFFERENT WAY than the typical order of business. ‘A’ does not necessarily lead to ‘B’. Sometimes, ‘A’ leads to ‘F’, then back through ‘C’ and ‘D’ long before ‘B’ shows up. Sometimes ‘B’ doesn’t show up at all, but ‘R’ does and turns out to be a doozy.  Our kids development is not delayed. It is disordered – differently ordered. 
For me, this has been a HUGELY important distinction. I think we lose a lot waiting for our children to ‘catch up’ to their peers. One can’t catch up to someone who is walking on a different road. It simply doesn’t work that way.  But God, our kids DO change and grow and learn and develop, don’t they? IN THEIR OWN WAY, IN THEIR OWN TIME, WHEN THEY ARE READY.

Autism Is The Invisible Disorder

Please read the following article, it says everything I want to say:

http://theadventuresofboywonder.blogspot.com/2010/10/invisible.html

We Found The Bug

We figured out the bugs name that has been bothering Shane and its name is bronchitis. Last night when I got home from work Shane was waking up from a nap and he had  a temp of 101.8 and he was breathing like he had just ran a marathon. So I decided to get to an ER and find out what was going on instead of a long night of "I shoud have....". And the doc says he has bronchitis. Easy enough fix, just take this medicine for 5 days and you will be fine. We picked up the medicine on the way home and when we got home Shane took it - easy peasy, right? Except the medicine (which is liquid with cherry flavor) is SO nasty that Shane can't keep it down. My little soldier tried so hard to make that medicine stay in his tummy but it just wasn't going to happen. So after one projectile vomit (on me and some blankets) and two regular vomits we finally gave up. And of course I called his regular doc the first thing this morning around 9:30am to see if there was another way to administer this medicine in a different form and it is now 3:47pm and I still have not heard back from him. Way to be on top of it Doc!
Honestly, Shane is the one who is sick but the mini crisis last night took more of a toll on Kassidy then it did on Shane. Remember the wonderful aspect of autism that lets its host remember everything? Well, that is a double edge sword. You see in April 2010 I went to the ER one night too and didn't come home because I had to have my appendics removed. And then a few days later I was taken away in an ambulance from my house because I thought I was having a heart attack and then a few days after that when I kept getting these "heart attack" episodes I was put in the hospital for 6 days with a "blood clot in my lungs" that turned out a few days later still to not be a blood clot at all but a mis-read catscan of a shadow from the dye they used to do a test. (Finally we got it figured it that I was having reactions to the pain medicine that was causing respiratory depression.) While all this was going on, Kassidy was at home FREAKING out because mommy had never been away before, especially at night. And here we are 9 months later and Kassidy is still super anxious about me being away from her. She even requires me to call her when I am almost home every night so she will know I am ok. So last night, even though we were really only gone for 2 hours, Kassidy flashed back to April and May 2010 and the freakout is on!  So much for sleeping through the night now.

The Bug That Wont Go Away

Shane is sick AGAIN. This is the 4th time since Oct that he has had fever, congested cough and runny/stuffy nose. This morning before I left for work his temp was 102.5. He is quite a trooper though, with that fever and then throwing up, it didn't stop him from playing on the computer. If it were me, I wouldn't get out of bed. But then again, I passed another kidney stone yesterday using just a heating pad and aspirin so maybe he gets it from me! (Ok, it wasn't one of the big stones.) And of course today is MLK day so no one is open for business. Guess the doc will be hearing from me first thing Tues morn.

Vehicles Are Not The Only Things That Can Backfire!

Well, the honeymoon is over. Kassidy slept through the night for 7 straight days and then last night was a nightmare. She wasn't tired and finally fell asleep around 12:30am only to be up again around 4am and then back to sleep around 5am and up again around 6:30am. I don't usually work on Mondays so if this had been any other time, I would not have cared so much since my wonderful husband lets me sleep all day if I want on my days off. But today I had to work because the office was short a person and we are in the middle of a company audit. All I can think about is my nice warm bed and.........zzzzzzzzzzzz.

Neurotypical vs Autism

Last night I discoverd something about autism that I love.  Our neurotypical son Shane (5) was angry at me because I had started to read a book with Kassidy and by the time he was ready to join us we were already half way through the book and he wanted me to start over and I refused because I had invited him to join us before we started and he refused. So I got the typical, "If you don't start over I won't love you" blah blah blah which by the way doesn't work with me but it doesn't stop him from trying. Later I was thinking about it and I realized that Kassidy has NEVER said those words to me, EVER. Chalk on up for autism!

UUGGH

Last night as Kassidy and I laid down to sleep, I decided to ask her how her day was. Now I usually ask, "How was your day?" and I get the same thing every time, "Fine." So I decided to word it differently and I asked her, "Was today an easy day or a hard day?". She thought about it for a few minutes and I was just about to ask again when she replied, "Easard". My first thought was - Am I that tired that I can't understand what she is saying? Then I asked her "What?"  She replied with the type of tone that a teenager gives you because you are so stupid, "Some of it was easy and some of it was hard, so it was easard, duh."

Here I am again feeling like Charlie Brown trying to kick that football just as Lucy snatches it away. UUUGGH!!!!!!!!!!!!!!!!!!!!

Rules by Kassidy

- We were watching Chuggington (on the Disney Channel) last night and the trains were people watching. Kassidy looked at me and said, "That's stalking!"

- Santa brought Kassidy and Shane a huge cardboard house that you can color the outside and inside of. The outside has pictures of things you would find on the outside of a house like porch light, mail box, etc. Well there is also some flowers with a butterfly flying above them. Kassidy colored the butterfly very nicely, then drew something dripping down from the butterfly into a blob and then wrote this next to it: Blood (don't scream).

- I was informed by Kassidy last night that she can not do her homework until after she takes a bath - that is just the way it is.

I'm really tired!

Is That Right?

Anyone affected with autism sometimes has a different or funny way to say what they want to say.  A mom on her blog wrote the following about her son:

* We were at the supermarket and Bud got a superball out of the quarter machine at the door. It was a swirly, translucent, unremarkable superball. I hoisted him up into the shopping cart, and he held up the superball and said "Mama, what's this?" (This is one of Bud's favorite activities. He will make a proclamation: "I following the footprints!" and then test me on it, "Mama, what I'm doing?," either for his own edification or so that he can be sure that I get it. Regardless of my answer, I am quizzed for the next 15, 30, 60 minutes - "Mama, what I'm doing?" - I guess, to make sure I don't forget.)




So, I replied "It's a ball."


He said, "It's a hamster." (A hamster?) "Mama, what's this?"


"It's a ball," I said, slightly less sure of myself but feeling the need to hold my ground.


"No," he said. "It's a hamster." I started panicking. Was it a hamster? I held it up to the light to see if there was a hologram inside that I was missing, but it was just a regular old superball.


"I don't understand, honey. Can you tell me more words?"


"It's a hamster. Just like church." Then, like when all of a sudden the dots in a magic eye picture become the face of Dwight D. Eisenhower, it all fell into sharp focus for me and I got it.


We go to a tiny little church, where Bud is usually the only child in their even tinier "Sunday school" program. His favorite toy in the playroom there is a marble-run building set. But he keeps forgetting the word "marbles," and instead he calls them "gerbils."


The superball - round and translucent and swirly - is a lot like a marble/gerbil, only it's different.


And what else is like a gerbil, only different?


A hamster, of course.


Not even wrong. Remarkable, insightful, completely outside-the-box, but not even wrong.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Don't you think that we could all use that phrase more often:  Not even wrong!


*Story can be found at the following link: http://momnos.blogspot.com/2005/03/not-even-wrong.html

It Has Been a LONG Wait!

Kassidy has not slept through the night at all for the first 6 years of her life. A few weeks ago she did it once. Now for the past 4 nights, she has slept through the night (10pm to 7am) - why? I think it is because of a new, heavier quilt that I just started using for her after she is asleep. Apparently you can purchase weighted quilts according to the persons weight and it supposed to release seretonin to help them stay asleep. They recommend it for a lot of people with autism and other sleep disorders. So I was overjoyed yesterday that  Kassidy has actually had 3 full nights of sleep because I was hoping that a more fitful rest would mean less anxiety for her during the day. Then I went to lay down with her last night for bed (because she says she can't go to sleep unless I lay with her) and she said, ."Oh, mommy, I forgot to tell you that I fell asleep in school today." I said, "You did?" and she said, "Yes, I was doing my spelling words and I fell alseep. I even missed the first part of recess - how did I do that?"

Back to the drawing board!

More Questions then Answers

Kassidy is starting to understand that she is different. When is the right time to explain to her about PDD and that she is just a person with the condition of PDD just like mommy is a person with the condition of Fibromyalgia?

After seeing how her anxiety can be severe at times, when is the right time to try medication to help?  Mommy takes anxiety med's and without them mommy would lose her mind. Is it fair to ask Kassidy to cope by herself?

Is it fair to not give Kassidy medication (prescribed) to help her sleep better at night (a lot of families with autism use melatonin)?

From the start I was against any meds for Kassidy like the ones they use for ADD. But is it so wrong to help her to cope with this crazy world if we can? Help!!!!

Learning from others

Lately I have been reading a lot of other mom's blogs about their children with PDD-NOS and I am addicted. Most of the blogs begin back in 2005 and their child is about at the age that Kassidy is now so I am picking up so much info. Some of what I have learned is: most PDD children love the water, don't sleep well, script for conversation (repeat shows or songs while playing or talking with others), love playing on the computer, hate wearing clothes (at least most of the girls), stimm, are highly intelligent academically and most of all, are the pride and joy of their parents lives. A lot of the time they can add humor to the equation too - last night Kassidy (who is 7) told me as she was falling asleep that she was too tired to sleep. That's our girl!

Weird Happenings

Yesterday was like the twilight zone in my house. When I got home from work, Kassidy was acting typical and Shane was acting autistic. Even this morning Kassidy went out of her way to make her brother feel better when he was acting up. It is like they switched bodies ...... weird!

Theory of Mind

If you want to read a great explaination of how Kassidy thinks sometimes, read the article at the following link:


http://momnos.blogspot.com/2005/05/theory-of-mind-of-my-own.html

My Heart Was In Pieces

This morning Kassidy broke my heart. She was having a HARD morning. School started back up yesterday after Christmas break but Kassidy didn't go because she had been up since 2am the night before with, let's just say "tummy issues" which after our 10th (that's right, I said 10) visit to Mr. Toilet she could hardly walk due to her hurting bum.  So today was Kassidy's first day back and she was a wreck. She had the look in her eyes as if we were sending her to stand in front of a firing squad. The anxiety she was feeling and the terror in her face just killed me. Of all the different things we deal with about her autism, I think that the anxiety she faces is the hardest, it is for me anyway.

The Transfer Went Well?

Well much to my surprise and shock, the kids took it great getting the new cable system and losing all of their recorded shows that was on the DVR satellite. Mom and Dad are not  real thrilled with the new system but life is what it is. The kids like it because they now get Disney XD along with the regular Disney channel, Nick and Cartoon network. I do like the fact that I have the Animal Planet channel back though.

Now the internet service upgrade would have been wonderful if it had been working right. After the cable employee did something on the pole behind our house so that our service would be faster, all of a sudden we would lose the internet when the sun went down. And then as soon at the sun came up the next day it would be working again. And of course when you call for assistance you get someone in India that is following a script and tells you it's the motem. Even after another cable employee came out and checked everything out it still was not working at night - you could set your clock to it. After a lot of yelling and choice words from my husband to any and everyone at the cable company, they finally got someone out LAST NIGHT to try and figure it out. And between him and another wonderful fella, they got it figured out. They climbed polls in the freezing ass dark night but they fixed it. Apparently what was happening to us was happening to everyone in our area (only about 500 people) and it was all because the moron who upgraded us did not tighten a connection up on the poll. So for 5 nights, no one had internet because we got an upgrade. The hardest part was Kassidy not having her internet because that seems to be were she finds her peace. She can put on her headphones and block out the rest of the world and live in her own for a while. But she actually took it pretty good and didn't complain or whine too much about it. Although, with Kassidy, things can be deceiving.  3 weeks from now she will probably start to show the anxiety and stress of not having the internet and it will manifest in another way.  Only time will tell. And at least we got the internet back now.....sorry for the inconvience neighbors!