Sunday, September 28, 2008

Music to my ears

I haven't blogged lately about autism and our challenges and progress. I thought I would share something interesting that's been going on the last couple of weeks: Austin has become a fan of Blue October (a music group that I learned about through my obsession with the Twilight Saga series of books).

Side note here: Blue October is what I would consider alternative/hard rock, though I'm not really familiar with what they would consider themselves to be, or what the current terms are. Their music is edgy and there are some curse words in their songs that are blanked out in the versions I've purchased. Just wanted to forewarn anyone who might be interested in checking out their music but for whom this is a deal-breaker. In our family, we allow a wider variety of media (especially music) than I know many homeschool families allow. If you are interested in the music of Blue October (which I cannot recommend highly enough!!), you would probably want to listen to it first without your children around! ;) Ok, back to the story ---

So, a 12 year old likes a music group. This is news, you may be thinking? For Austin, it is indeed!

Austin has never been able to identify things he likes. He couldn't tell us which toys he liked (he never played with them anyway), what kind of birthday party he wanted (we would always pick one based on what we perceived his current obsession to be), what kind of shirt he wanted to wear, what his favorite color was (he would tell us white for YEARS!). Once we learned more about autism and through our understanding of RDI, we came to understand that this was a problem in not understanding who he is, that he has a mind and that he can have preferences that are different from others. Also, for Austin, he has always been very intent on making sure everyone was happy, in order to keep control over situations (people who are upset are very unpredictable).

We first noticed that he was developing preferences back in May around his birthday. He requested a cake from Publix and he was quite specific about the kind of cake: white cake, green balloons on it, green writing. We were SO excited that he had expressed a preference, I think we would have paid $1000 for such a cake if we had to! LOL

This is how the Blue October thing has played out: I started listening to them in August, after watching the Breaking Dawn release party concert series live streaming (click on the link to watch the video) on the internet. I purchased the mp3 download of their most recent album immediately after the concert, and fell in love with it!! I decided after several listenings that the kids could listen, also (except for one song that I don't want Reece listening to called "Hate Me" --- she has a problem still with repeating things she hears). So we've been listening to Blue October as a family for about a month.

Recently, when we've been getting in the van, Austin will turn on the mp3 player right away and putting on Blue October. He tells me he is doing it to make ME happy! But then I catch him out of the corner of my eye tapping along with the music! When I asked him if he likes Blue October he just says, "It's good!" But he has this smile on his face that I know means that he really likes something but is too overwhelmed to express it verbally!

I found out through a friend that it's possible to put media files on a PSP, so I thought Austin might like me to put Blue October on his PSP for him. When I mentioned this yesterday he got VERY upset. He told me that he didn't think that was allowed (putting music on the PSP). I showed him on his PSP that there was a spot for music, and then I dropped the subject.

A couple of hours later, Austin came to tell me that I could put music on his PSP later in the evening. This was definite progress, too. A few hours to come to terms with an abrupt surprise is a huge difference from the months it used to take him! I can remember him getting new games for his Gameboy at Christmas, and he would finally open them in June to play with them! Now he gets a new PSP game and plays it right away --- but this was a whole new way to use his PSP. To use an RDI concept, it was 'Same but Different' and that can take a little getting used to.

Last night I got distracted with lesson planning so I didn't get around to putting the music on his PSP, so I did it this morning. It took me a little while to figure it out, because I am NOT technology savvy! I let Austin watch me puzzle the problem out, look up information on the internet, and generally not let myself get overwhelmed by frustration (heck that's a lesson for me, too --- I can't STAND it when I can't understand something right away). In the end, we got the music on his PSP!

He listened to it for a moment with that same "happy but overwhelmed" smile on his face. I asked him if he wanted more music on there, like Muse (which is another Twilight Saga band that I have been introduced too, but it is a different style of music -- alternative again, perhaps, but not so much hard rock as Blue October). He said that he was OK right now with just Blue October, but maybe another time I could put other music on! :) That works well for me!

To completely press my luck, I asked him if he wanted a couple of baseball pictures on his PSP to show people. He looked at me in shock and asked if that was allowed. I showed him the icon on the PSP for pictures, so he said sure! I put 2 pictures of him pitching and one of him batting, and showed him how to access them.

Then he put his PSP in his room! LOL I bet I will find him listening to music or looking at the pictures later on this evening, when he has come to terms with it --- a few hours, instead of a few months! Sure, it's not what you would expect from a typical 12 year old boy, but for Austin, it's definitely progress. And that's music to my ears! :)

Thursday, September 25, 2008

Apples to apples!

Today we went with our homeschool group to go apple picking. This orchard is 8 miles from my house and I never knew it was there!! The older gentleman who owns it was very nice! We started off at the pear tree, which served to confuse Reece a great deal: "I thought we were going apple picking!" LOL

Riley is right next to the owner, holding the other picking stick contraption!

Here are the apple pickers! I don't think any of these are my children though! LOL We had 17 children in attendance. My camera was acting up, so I didn't get all of the shots I wanted. I took some video with my Flip, so maybe I can pull a picture or two from it later!
This is $10 worth of apples!! I wish I had known this place was so close to my home! We will definitely be going there again next year, earlier in the season.
Another shot of the apples... I'm just overwhelmed at the number of apples we got for the price!
The girls couldn't wait to dig in! I was really shocked, because they don't look as pretty as the ones from the grocery store or as big. Austin won't try one, yet, but I'm not going to push it!

I guess I ought to be googling 'apple recipes'! The girls really want apple pie... does anyone have a SIMPLE, yummy apple pie recipe to share? Simple as in put apples into a premade pie crust and bake? LOL

Monday, September 22, 2008

Ultrasound Results are in...

and everything looks normal!! YAY!

Sunday, September 21, 2008

A Brand New Week

Last week met with a hospital visit (MRI and Ultrasound), a sick mama, and (Talk Like a) Pirate Day. The lack of productivity was frustrating, to say the least! I am anticipating a full week of lessons, academic and otherwise!

We have a field trip on Thursday to pick apples for the first time! I am SO excited about this! We love picking strawberries, and we all LOVE apples! Can't wait! We also have an RDI appointment with our consultant to try to help me get back on track with RDI, which has suffered due to the emergencies of the last month.

Mostly, I'm hoping to move into a normal routine again! Keep your fingers crossed that it all works out!

As a side note, I am really diligently trying to eliminate the use of the word "school" from our vocabularies. It is such a difficult thing, and it's not just a matter of semantics! We aren't "doing school" at the Black Pearl Academy. We are learning, all the time!

Thursday, September 18, 2008

Booty

One can never have enough socks - Professor Albus Dumbledore, Harry Potter and the Sorcerer's Stone

Today in my mailbox, I found something which combines two of my favorite things (yes, I'm humming the song from The Sound of Music!): warm socks and pirates! My friend Jamberry is an extremely talented knitter, and she chose to bless me with the fruits of her talents!

The picture does not do them justice --- these are the most beautiful, toasty warm socks I've ever had! They brightened my day more than I can begin to describe! Thanks, Jamberry! :)

What great timing too... just in time for (Talk Like a) Pirate Day tomorrow!

Tuesday, September 16, 2008

MRI news

The neurologist called tonight because she had gotten the message that I called yesterday and sounded "distressed". She pulled Austin's MRI, and it is completely CLEAR!! What a huge relief!

So now we can just keep on with the plan of meds for a few years, watching him carefully, and following him with blood work and tests as necessary.

I'm so relieved, and glad to not have to wait all week for these results! Hopefully, we'll get the ultrasound results tomorrow or Thursday!

More tests done!

Austin and I are home from the MRI and Ultrasound. Everything went well, as near as I can tell. At least we made it home without the doctor frantically trying to get ahold of us to tell us life-altering news! ;) We should have the results in 2-3 days!

Austin did well during both tests... he was sedated for the MRI, and it was a good thing. The nurse said he was moving, even under sedation! His lower legs/feet weren't strapped down, and she said they were just moving like crazy. He woke up well from the sedation, but he was still a bit wobbly. He seemed a bit off to me. Once he took his meds, then especially after he ate, he seemed to be back to normal, if a very sleepy normal.

The girls did very well this morning with Mrs. H who came to stay with them! I'm proud of them, and thankful to her for being able to do that for me!

Now, I'm going to try to get a nap before I have to take Riley to auditions and dance class.

Monday, September 15, 2008

Frustration

I called the neurologist this morning to check on Austin's blood test results. The nurse called me back and said that, while the doctor hadn't had time to look at the results yet, everything seemed to be in order. I asked her if the doctor would be looking at the results today? No, the neuro is out of the office for the week. I told the nurse that the doctor told me last week at our appointment that I could call and talk to her after the MRI is over, so I can find out what's going on more quickly. The nurse repeated that the doctor will be out of the office for the entire week. She asked who ordered the MRI, and I told her it was the ped. She said that the report would go to the ped. I told her that I knew that, but that when I asked the doctor, she told me she could look it up on the internet. The nurse repeated again, in case I was perhaps an idiot, that the doctor would be out of the office for the week.

At this point, I lost my composure. Trying not to cry, I told the nurse that we are trying to figure out what is going on with my child who had a grand mal seizure a month ago, and whose EEG shows seizure activity. That I can't even tell if the meds are working, because I can't tell when/if he's having a seizure. I am counting on the bloodwork, and the doctor's interpretation of the bloodwork, to let me know if everything is working. And we're having the MRI tomorrow morning to see if there is something else going on and I was really hoping to have those results quickly so I can start moving forward. Guess what?

The doctor is out of the office for the rest of the week.

There's more medical/health insurance related stuff, but I don't even have the patience to type it all out.

Wednesday, September 10, 2008

Neurologist update

We saw the neurologist today, and I really like her. She saw my list of questions, and chuckled, and said we should go ahead and answer those first since it looked like there were quite a few. Austin had also written a question, and she answered his question as well.

Austin does have a seizure disorder/epilepsy. The type of seizures indicated in the EEG are "generalized seizures" which means they are occurring all over his brain. He will be on seizure medication for a few years, and then we will re-evaluate (as he gets close to driving age). He can take his melatonin with the seizure meds, which is a relief to all of us! The neuro didn't hesitate on that question at all. She had asked him if he was feeling anything from the meds and he said he was just tired because I wouldn't let him take his melatonin until we talked to her! He was actually really funny and charming towards her: he told her he needs to make sure none of his medication has HGH (Human Growth Hormone/steroids! LOL), so he doesn't end up in the minature Mitchell Report (that was the report on rampant steroid use in major league baseball).

He can continue to play baseball, swim, and other activities. The doctor said doesn't want us to leave him home alone for a year, until we have everything stabilized for sure. She gave me a script for his daily medicine, as well as something to use if he has another of the big seizures like he had a the pool. We did another round of bloodwork today to check the levels of the medicine in his blood, and also to check liver function (a side effect of the seizure medication). She wants to see him in 4 months.

I asked about having Reece evaluated for seizures by getting an EEG on her, since the neuro said that seizures tend to occur more often in children on the spectrum. The neuro said that we can just watch Reece and wait to see if she is having periods of staring or blanking out. So I'm going to be watching her closely, especially as she gets older and approaches puberty.

We did have to move the MRI to Tuesday because when the ped ordered it, she didn't include that he will need to be sedated for it. I can call her for the results that afternoon because she can pull it up online!! I think that's very cool!

I can't think of any other details right now. If you have any questions, please leave a comment and I'll get back to you!

Sunday, September 07, 2008

Playing Orphans

I have been reading The Boxcar Children to Reece, and she is "narrating" on her own by "playing orphans". It's adorable, and they are spending all their free time doing it! They take towels outside under the tree for beds, for cleaning, and for anything else they need. I sent Austin outside to take a few pictures for me (I hurt my foot last week and it is being stubborn, so it's difficult for me to walk).

Here you can see the tree and the towels hanging in the tree, as they are drying after being washed:

Riley is washing Reece's face. Even when you are orphans, you have to stay clean:
Here is another picture of Riley hanging up the towels!

I enjoy this part of homeschooling the very best. I love seeing them extending upon something they have read or listened to, and making it a part of their play. And I love that they have hours in the afternoon to play, rather than having to do homework!

Saturday, September 06, 2008

Road trip, anyone??

I just read on the TwilightMoms site that Forks, WA is hosting Stephenie Meyer Day next Saturday, September 13th. Twilight fans will recognize that day as being Bella's birthday! :) They mention on the TwilightMoms site that over 150 Twilight Moms will be converging upon Forks for the celebration!!

They will be having tours of the high school, a Wolf Dance, bonfire and storytelling, and of course, birthday cake for Bella!!

So who's up for it?? If we leave Georgia on Monday we could probably get there by Saturday! :)

Friday, September 05, 2008

Weekly Review 9/1-9/5

This isn't going to be a very long review, because my mind has been so distracted this week with everything that we are dealing with with Austin. I know that we accomplished everything I had planned, but I can't exactly remember what that was! Here are a few highlights:
  • Riley took a spelling test today and got her first word wrong. She wasn't pleased. She still got an A/95%, and I bet she will spell field right from now on. I told her "I before E, except after C, or when sounding like A, as in neighbor and weigh." She glared at me and said, "You couldn't have told me that BEFORE I took the test?" ::shaking head:: Math is going very well for her, if she could only build up her speed. She is almost done with Pharaohs of Ancient Egypt.
  • Reece read her first Level 2 Real Kids Phonics Reader. It was a little more challenging, so we took it slowly. She is progressing nicely in math and spelling/phonics. I am reading The Boxcar Children to her now, and she loves it. She and Riley have been playing "orphans" under one of the trees in the front yard. Will try to get pics of it today!
  • Austin is working on equivalent fractions this week, and it's a bit trickier for him. He is doing pretty well with his spelling, and he's still reading The Golden Goblet. It's a challenging book for him.
  • We also did Bible, Scripture Memory, science, history, nature study, poet study, added a new hymn (Take My Life and Let It Be - our version is by Chris Tomlin), and a new character trait (Faith - how timely?!).
  • Austin resumed his Mind Bender puzzles and I was delighted when he said, "Oh I remember these! These are great!" We do them together with me talking them through out loud with him. Today he was able to tell me right away that the sentence, "Jack and the horse are good friends" lets us know that Jack cannot be the horse. We haven't done these since the spring, so I was very pleased!
We did not add Latin and Spanish as I had planned before. The shock of what we are dealing with, coupled with the amount of appointments we have coming up just didn't lend itself to putting more new stuff on the schedule. Riley did start her typing game and while she doesn't LOVE it (because it challenges her), she doesn't argue about doing it (because she has a competitive nature like her daddy!).

Hope you have a nice weekend! I'm going to be taking it easy! :)

Wednesday, September 03, 2008

My little dancers

Here are the girls going to their dance classes in their new leotards!


Tuesday, September 02, 2008

MRI Update

The pediatrician's office just called to let me know that Austin's MRI has been scheduled for Monday, September 15th. I had already guessed when it was because the children's hospital called me yesterday with an automated message saying, "Your child has an appointment in radiology on Monday, September 15th." I looked up radiology on the children's hospital website and found that MRIs are done there.

I was going to call and see if the neurologist wants to reschedule until after the MRI, but frankly, I want to get in to see her sooner than later. She can call me or we can go back in to discuss the results of the MRI if need be. I need some more answers in the interim.