Thursday, September 30, 2010

Hijacked: Our Autism Anniversary

This day was hijacked by Austin's ankle surgery... it all went very well, though, and he's now got a green cast on his lower leg! Unfortunately, I'm too tired to really comment on the most recent year of our autism journey! :) Please look for it tomorrow!

Wednesday, September 29, 2010

Five Years of Autism: Years 3-4

Looking back, I think that Year 3 was probably the worst of all. We had started RDI with a consultant, which was a good thing and a bad thing. Ultimately it was great for the kids, but it was very bad for me. And when we first started RDI, it was hard for the kids because it changed everything about their world and they had to try to let go of the control and allow themselves to be guided. And it required me to let go as well, which has ultimately turned out to be harder for me than for them.

The end of Year 3 culminated with Austin's seizures which rocked my world even harder than the autism did. To this day, I don't think I've experienced anything scarier in my entire life than watching my son have a seizure.

As Year 4 began, I took up running, and I made a conscious decision to start trusting God more. Who would have thought that the running would be the EASY part? LOL

When the seizures started, my life was consumed by that, and we decided to let our RDI consultant go. It was a difficult decision, but it was one that I don't regret. Our styles never meshed and I feel like we wasted a lot of money. If I had it to do over again, I would have voiced my concerns on the very first day that we went for orientation. Hindsight is 20/20, but the damage from that experience is still evident - thankfully, NOT in the kids themselves.

Year 4 also marked some changes in Austin and Reece. Austin seemed to be over the worst of the onset of puberty, and we gained seizure control with the first medication and only one adjustment (and one additional seizure). However, instead of seeing outward signs of stress... we were seeing more internal ones. Instead of crying or tantrumming, we got anger. Definitely more age-appropriate, but still very disconcerting.

That year was a huge one for Reece as well, as it represented, in my opinion... her 'awakening'. She was finally part of the world and while that was great, it was also really hard for her and for us. She became aware of her differences, and that made her upset. But until she reached that point, it seemed like we couldn't move forward. So while it was hard to see her struggle, it was good to know that we could work with things now.

It's so funny how each of these years, independently, seemed like the "Longest Year Ever" but as I look back on them, it seems like an eternity ago. And that it was just a blip on the screen. Amazing.

Tuesday, September 28, 2010

"Pop goes the ankle"

The title of this post is courtesy of Reece, who has been singing this since Saturday...

I need to rant and rave and pout and cry here, because I can't anywhere else. It's OK to skip this. I just need to get it out, and I can't because I have to keep an even keel and be strong for my son.

Dduring his game on Saturday, Austin stole third base... as he slid in, something bad happened, and he cried out in pain. He came home and we did ice, compression, etc. Yesterday I took him to the pediatrician's office, and they wanted him to go to the orthopedist today. He already sees an ortho because he has "hemihypertrophy" (one side of his body is bigger than the other, which causes him to have scoliosis). So we go see the doc this morning, and have x-rays, and it's BROKEN. The tibia is broken at the bottom. And not only is it broken, but he has to have surgery to put a screw in it so it will heal properly. He will be in a cast for 6 weeks, and then a boot for 8-10 more weeks. Baseball season is over.

It's just NOT FAIR. Baseball is his life. It's all he does, and he's REALLY good. On the field, he is just like everyone else. He struggles academically, he struggles socially - baseball is the great equalizer for him. He plays twice a year: spring and fall. Now this fall? Gone.

He also is a drummer. He's really good at it, too, and has started going to gigs with his musician father, and was asked to be in the youth praise band at church. Well, drummers need their feet, right? So that's gone, too.

Austin paces to calm down. Sometimes when he's really worked up he almost bounces, and we call it Gazelling. So now that's gone, too. His main way to self-regulate.

It's NOT FAIR. Not fair one little bit. I know life isn't fair, but what else does this kid have to go through? Asperger's wasn't enough... he had to have seizures. Seizures are under control now... he's been weaning off his meds for the last 3 months, with the last dose on Thursday of all days. I was going to let him start riding his bike up to the convenience store on his own. Can't do that now. Not for 3 months anyway.

I can't say any of this out loud, or even vent it on FB since he's on FB, too. I have to be cool, calm, and collected so he doesn't get upset. He's such a nice kid... why does everything have to be so hard for him??


Monday, September 27, 2010

Five Years of Autism: Year 1-2

This coming Thursday, September 30th, 2010 marks the 5th anniversary of Reece's diagnosis with Autism Spectrum Disorder. I've been doing a lot of soul searching in the last week or two as I come to terms with what this has meant to our family. Luckily (?) I started my blog back in 2005, so this entire process - or rather, what I decided to share about it online - is available for me to peruse at my leisure.

This is a good and a bad thing.

It's good because Years 1-2 are a blur. Right after Reece was diagnosed, we started on the diagnosis process for Austin. So within an 8 month time span, 2 of my 3 children were diagnosed as being on the Autism Spectrum. It was a scary time. The doctor gave me a very bleak outlook on Reece's future. I didn't share all of that publicly. It was way too awful. And then when Austin was diagnosed, that doctor blasted homeschooling over and over again. I sank into myself for a very long time, and I just don't recall very much of what was going on around me. It was so much of a blur of tests and speech therapy and occupational therapy. And worst of all, I was very, very angry with God for what seemed like a very, very long time.

It's bad because reading back in the posts brings all those horrible feelings back to me. I spent so much time being upset that I didn't pick up on this stuff sooner. That I didn't listen to what other people were telling me and recognize that my children were not developing typically. That I didn't listen to preschool teachers (and a Kindergarten teacher) that were telling me that something was off. Instead, I proudly stuck my head in the sand and said that you couldn't put my round box in a square box. I beat myself up for years over all the things I did wrong. And for every post that's on the blog, there are echoes of the posts I typed and never submitted. There are echoes of the tears that I cried into my pillow every night for years.

But in the end, it's good. Because it shows me (better than my very subjective memory can) how far we've come. And not just the kids... but me as well.

Wednesday, September 22, 2010

Lessons from Heidi

I hesitate to say yet again that I've been struggling with homeschooling this year. You would think that with this being our 9th year of homeschooling I would have settled into my groove and any fear and uneasiness would have long since past. It's hard for me that it seems each year gets more and more challenging for me in terms of the confidence I feel. And then last week during our week at the beach, when I was just able to be "MOM" and not teacher and autism therapist, I really felt a longing to stop homeschooling. I allowed myself to dream what it would be like to have some time to myself during the day, even if I went to work full-time (which I would do if the kids were in school - that income sure is enticing as well); how it would feel to be the "good guy" the kids could complain to about their horrible teachers; how nice it would be to not spend hours upon hours each week planning and prepping for lessons; how nice it would be not to worry about high school credits and how to make them for Austin when he struggles academically; and on and on.

I shouldn't have allowed myself to fantasize like that, because all it did was to make an already difficult re-entry downright miserable and sad. By mid-day Monday, I was fairly convinced that I should call the public schools and get the ball rolling on enrollment for the kids, and finding out what services they would be able to offer that we can't afford on our own.

Monday night I was given a gift in the form of a delightful "narration" of some scenes from Reece's literature book, Heidi by Johanna Spyri. Reece used her playmobil pieces and created these wonderful scenes. In this first one is Grandfather's house, with Heidi sleeping on her hay bed in the loft, Grandfather sitting on his chair that's attached to the wall, and Peter outside with the "goat."

In this picture, you'll see that Reece added the fir trees to the scene.
In this scene, Reece placed the carriage that took Heidi to and from Mr. Sesemann's home.
And this picture shows Heidi and Clara in the study with Miss Rottenmeier.

This was wonderful because the oral narrations Reece has been giving me from this book have been fairly sparse. I've even been wondering how much she understands. But it's obvious from the detail in her play that she is comprehending so well!

Today when I read her another chapter, I found myself deeply moved by a couple of passages. We are in Chapter 14, and Heidi says, "If God had let me come back to you at once, like I had asked in my prayers, none of this would have happened. I should have brought Grannie a few rolls I had saved, but they would soon have been gone, and I wouldn't have been able to read. God knew what was best, just as Clara's Grandmamma said He did, and see how perfectly he arranged everything. I'll always say my prayers after this, as Grandmamma told me to, and if God doesn't answer them at once I shall know it's because He's planning something better for me, just as He did in Frankfurt. We'll pray every day, won't we Grandfather, and we'll never forget God again, and He won't forget us."

My voice choked up as I was reading and my hands were trembling. Then just a few pages later, Grandfather goes up to look at Heidi while she sleeps. She had read to him the story of the Prodigal Son. "Several hours later, when Heidi was in bed and asleep, the old man climbed up to the loft and put his lamp on the ground so that its light fell on her. She lay with her hands folded, as if she had fallen asleep saying her prayers. There was a peaceful, very trusting expression on her face, which moved him deeply and he stood gazing down at her for a long time. Then he too folded his hands, bowed his head, and, in a low voice said, 'Father, I have sinned against Heaven and before Thee and am no longer worthy to be called Thy son,' and down his wrinkled cheeks rolled two large tears."

Well, I lost it there. I cried, yet I made it through the rest of the chapter. But I wasn't able to even ask Reece for a narration. I just sat there with my heart full of emotion. Who knew how wonderful this book was? I knew the basic story, from a Shirley Temple movie, I think. But reading it for myself, sharing it with Reece, is a priceless experience!

As I prepared to write this entry, I looked over the Ambleside Online website to find out if this book was scheduled for Year 1 or Year 2 (since Reece is sort of straddling the two years). Imagine my surprise when it's listed as a Free Reading selection. I wonder how I decided this summer to put it into our schedule, especially at the beginning of the year? Maybe it was on the WTM list for the Modern time period as well, so I bumped it up? I truly don't know. But I'm so glad it's on there, and I'm so glad to be able share it with Reece. And I definitely needed to read/hear the Truth and read this example of faith.

I need to take these little moments and cling to them for my peace of mind.

Tuesday, September 21, 2010

STICKY: Catching up!

The last 3-4 weeks have been quite crazy! I'm going to attempt to catch up in the next day or two, so check back often for posts under this one! :)

Beach Vacation 2010

After a 3-year hiatus from a family vacation (thanks to Dave Ramsey), we got to head back to our favorite beach! This was the 5 year anniversary of our first trip there, and we had an absolutely wonderful time!

The lighthouse which had fallen into the sea in 2005 has been moved and rebuilt, and we walked to the top!
This was such an "ON" week for Reece! She played and had a wonderful time. She slept well, and she only had one day where she struggled. It was so nice to see her having fun!
We did our traditional pictures again... will have to get the old ones out to compare! :)

And the traditional "Say goodbye to the beach" shot! :)
I have a feeling this may be our last family trip to the beach. It's very sad, but our family budget has taken some major hits. We have been able to maintain a "Vacation" budget, but the boys enjoy their fishing trips and the girls enjoy their Disney trips. That doesn't leave much left over for a family trip! LOL You never know, though... a lot can change in two or three years! :)

Another Half Marathon!

Over Labor Day weekend, I flew out to California to run in the Disneyland Half Marathon. Earlier this year I ran my first half-marathon at DisneyWORLD, and by running a half in the same calendar year at DisneyLAND, I would received the coveted (by me) "Coast to Coast Medal".
Running through another castle was great fun!
We got the added bonus of running through Angels' Stadium in Anaheim. Being a baseball fanatic, I was more than thrilled!
Here I am nearly at the finish line!
Back in the hotel room with my 3 medals: The one from March's Princess Half Marathon, the one from the Disneyland Half Marathon, and my Coast to Coast Medal!